Music Monday | Brand New Sun – Jason Lytle

On Wednesday, it will be the twelve-month anniversary of when I took G to the hospital for strange, stroke-like symptoms that turned out to be brain cancer. The next two months will be filled with dates like these; that time he had brain surgery, the time he came home from chemo but developed a severe septic infection and had to be placed in a coma and his organs started to fail, that time after he woke up from the coma but couldn’t walk or talk or move…

I am not sure how I will process the next few months. I didn’t process any of these events or emotions last year; instead, I woke up every day and simply did the things that needed to be done without thinking about anything else.

Eleven months ago, I took myself to the emergency department for heart issues and chest pain while G was in hospital. The triage nurse took my blood pressure, looked at me and said, “Oh, sorry, it hasn’t worked–let me take it again.”

I asked what it was and she said “It’s 158/123”, which put me in the hypertensive crisis category.

“No, that’s right,” I said, “based on what I’m feeling.”

My ECG was normal, even if my heart rate was elevated. They diagnosed me with stress and suggested a follow up a few months later. That ECG in January was normal, too. But now, even though the stress has dissipated, my heart is still palpitating and thudding a couple of times a day. I still have chest pain, multiple times a day. So I’m typing this with a holter monitor hooked up to my heart. I’ve pressed the button several times for mild pain but I haven’t had a bad episode yet. And I don’t think 24 hours is long enough to register one. A month ago, I’d have had three-four episodes by now. A few weeks ago, the palpitations were so intense I had to pull the car over on the side of the road and wait until they had passed. But now, they’re only happening every few days so I’m sure we won’t record the problem–tests are often ridiculous that way. Unless there is more happening that I don’t actually feel?

So, as we approach what I’m calling “anniversary season”, I am going to focus on sorting out my own health and being grateful that G is still here–currently cancer-free, progressing in rehab, and making just as many terrible jokes as ever. Maybe we’ll get our 40 years together, after all.

You should hold my hand

While everything blows away

And we’ll run

To a brand new sun

Music Monday | It’s OK – Nightbirde

If you haven’t seen Nightbirde’s golden buzzer performance of this song on America’s Got Talent, are you even on social media??

A couple of weeks ago (yes, it’s taken me this long to make time to post) I overheard G listening to something on his phone in another room. I wasn’t able to make out the words, just a soft melodic voice floating into the kitchen from the lounge room, and as I walked in to where he was sitting to find out who it was, all I could hear was “it’s ok, it’s ok, it’s ok, it’s ok if you’re lost, we’re all a little lost and it’s alright…”

Later that night, I googled it for myself and sat in bed listening to the voice of someone still battling cancer telling me that it was alright.

When G was first diagnosed with a rare and aggressive lymphoma last year, I spent hours telling other people that bad things happen to good people and that there is no rhyme or reason as to why some people develop cancer; one in two men will develop some type of cancer in their lifetime, as will one in three women. All the while, I was running through a list in my head of all the possible ways I was responsible for his cancer–everything from physical (I must have weakened his immune system by giving him HIV even though I don’t have HIV), to spiritual (God is punishing me for not believing in God anymore), to psychological (if I don’t perform certain rituals and compulsions then bad things happen to people I care about).

Being responsible for it meant that it was possible that I could resolve it, fix it–maybe–or at the very least, I was to blame–and that life wasn’t as uncertain as it felt when the outcome of this disease was entirely out of my hands. It’s not that I’m a doctor. I just feel like I should be able to fix everything for those I love. Because although G was the one with cancer, he wasn’t the only one impacted.

In Nightbirde’s AGT introduction, when she explains she still has cancer in her lungs, liver and spine, one of the judges says “oh, so you’re not ok?” and she replies “not in every way, no.” And then she says the thing I’ve spent the last year trying to teach and learn at the same time…

“It’s important that everyone knows I’m so much more than the bad things that happen to me.”

Music Monday | World Spins Madly On – The Weepies

We spent today in Melbourne for an appointment with the infectious diseases specialist who is treating G’s hip infection, for blood tests, x-rays and an MRI. We will get those results next week.

I am tired. It takes about 12-14 hours a day to do everything I need to do to care for G and get all the jobs done around the house. And that’s when other people aren’t making extra work for me.

It feels like others are able to just go about their normal lives. Australia is largely protected from the worst of the pandemic and these days, restrictions are relatively relaxed. People are moving about and moving on with their lives. And I am standing still.

I let the day go by
I always say goodbye
I watch the stars from my window sill
The whole world is moving and I’m standing still

Music Monday | Punching In A Dream – The Naked and Famous

For some reason, YouTube seems to be showing me a flashback of my playlist in 2010 as I search for music tonight. It’s almost impossible to fathom that eleven years have passed since I changed the course of my life. In early 2010, I began treatment for an eating disorder that had comforted me on and off for almost fifteen years. I left a marriage that was nominal only; my husband far more interested in women inside his computer. I had no idea what I was doing. And I was so ill, there was no guarantee I’d live to see the end of the year. So eleven years feels like some sort of achievement.

In December last year, I hit a personal record for the longest time living in the same house. At the end of May this year, I’ll reach another milestone–seven years with my beloved–and not one “break” or break-up. These things may seem trivial but when our future–indeed, our present–has felt as precarious as it has in the last eight months, they are my touchstones. So tonight I’m remembering the woman from 2010 who was brave enough to seek help, brave enough to leave, and brave enough to live. And I’m saying thank you. These songs are for you.

Songwriters: Aaron Short / Alisa Xayalith / Thom Powers
Punching in a Dream lyrics © Sony/ATV Music Publishing LLC

And, a bonus song!

Songwriters: Aaron Short / Alisa Xayalith / Thom Powers
Young Blood lyrics © Sony/ATV Music Publishing LLC

OK, two bonus songs!

Songwriters: Oliver Sim / Baria Qureshi / Jamie Smith / Romy Croft
Crystalised lyrics © Universal Music Publishing Ltd., Universal-polygrm Intl Pub Obo Universal Music Pub. Ltd.

Music Monday | To Build A Home – The Cinematic Orchestra (ft. Patrick Watson)

We are home.

After seven seemingly endless months, we are finally home.

Together.

There is a house built out of stone
Wooden floors, walls and window sills
Tables and chairs worn by all of the dust
This is a place where I don’t feel alone
This is a place where I feel at home

‘Cause, I built a home
For you
For me

Until it disappeared
From me
From you

And now, it’s time to leave and turn to dust

Out in the garden where we planted the seeds
There is a tree as old as me
Branches were sewn by the colour of green
Ground had arose and passed it’s knees

By the cracks of the skin I climbed to the top
I climbed the tree to see the world
When the gusts came around to blow me down
I held on as tightly as you held onto me
I held on as tightly as you held onto me

And, I built a home
For you
For me

Songwriters: Jason Angus Stoddart Swinscoe / Patrick Watson / Philip Jonathan France / Stella Page
 
To Build a Home lyrics © Kobalt Music Publishing Ltd., Intrigue Music, LLC

Deterioration

I wrap myself into my quilt like a burrito. I’m sleeping on the couch which, while not overly comfortable, doesn’t induce the same anxiety as having an argument with myself about going to bed. Instead, when I become sleepy, I close Instagram, blow out the candles, turn off the salt lamp and roll over.

I am not sure why going to bed holds such angst for me but it always has. At least, until I met G. For the first time in my life, I looked forward to going to bed because I felt safe. Held. Loved. I try to replicate this feeling now while he’s not with me but the best I can do is to stay awake until it is impossible not to sleep.

In the last week, there has been another infection, two surgeries and blood counts that still aren’t following the predicted path. My OCD has fixated itself on his illness and now intrusive thoughts of blame drive all manner of compulsions, day and night. If I haven’t given him covid, I must have given him cancer.

Life is random and unfair, I tell others. Bad things happen to good people for no reason. And while I almost believe that is true,  intrusive thoughts still swirl that this is somehow my fault. My punishment. For what exactly, I haven’t determined. It could be a range of things and my brain is providing plenty of options. As a result, my anxiety is out of control. Today I had a telehealth appointment with my GP who has recommended blood tests, an ECG to check my heart which has lingering issues from my years of being underweight due to anorexia, and some medication.

“This is the only prescription I will give you for this medication,” he tells me, “due to it having addictive properties. You must be sparing in your use but it will help with the panic attacks and anxiety. I will give you a second prescription for something that you can use long term but the effect won’t be noticeable for two to four weeks.”

It’s been seven years since I took medication for my mental health and while I suspect I need it, a new fear has surfaced during the pandemic and my husband’s illness which will likely prevent me from doing so; I cannot take any medication for fear of the masking of covid symptoms or because I may have a bad reaction requiring treatment. I will no longer even take paracetamol or ibuprofen, pain killers I have taken for years, especially when I have severe cramps during my period but now I am afraid they will mask the symptom of a fever and I will never know if I accidentally acquire covid. I will not take new tablets, not even vitamins, in case they cause some sort of reaction where I have to present to a hospital because the more places I go, the more likely I am to come into contact with someone with covid. My anxiety is pushing me towards never leaving my house again, unless it’s to travel to the hospital where my husband is having treatment. Home. Hospital. Home. Hospital. That is the extent of my world right now.

And all of it seems justified.

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.

Fate

Fate, Federal Court, Moon
by Anne Carson

The fate of the earth. The fate of me. The fate of you. The fate of Faisal. The fate of the court where Faisal will plead his case. The fate of the court’s bias. Every court has a bias. It sifts to the surface gradually. The fate of whomever we drink to after court. The fate of that branch of mathematics that deals with ‘dead-end depth’. The fate of Yemen where Faisal will probably never return. The fate of the engineering job Faisal had in Yemen before the events in question. The fate of the ‘simple random walk’ and its difference from the ‘homesick random walk’, concepts from a mathematics textbook I read once about dead-end depth. The fate of Montreal where Faisal lives now. The fate of his family, the ones still alive, back in Yemen and the fate of the bridal couple, still alive, whose wedding was the target of the drone pilot (a mistake). The fate of the others, not still alive (a mistake). The fate of the moon that rose over us as we drove through the mountains of Pennsylvania to be present at Faisal’s day in court. The fate of the silveriness of the moon that no words can ever describe. The fate of the bright sleepless night. The fate of our phones, which we decide to take to the courthouse at 9 a.m. and relinquish at the door. The fate of two guys doing a job interview in the cafeteria where we stop for coffee on the way to courtroom 31. Been around the block, says one guy. Army does the billing, says the other guy. The fate of so many men in suits and ties. The fate of being lost in marble corridors. The fate of being much too early at courtroom 31. The fate of the knot of lawyers who surround Faisal as he enters in a new suit. The fate of congratulating him on his new suit. The fate of his smile. His smile is great. The fate of the numerous clerks who pour glasses of water for the judges and generally fuss around. The fate of the appellant whose case precedes Faisal’s, which concerns a warrant ‘so lacking in probable cause’ that [something to do with ‘Garcia’] [something to do with gangs and ‘a constitutional path’]. The fate of the pearls worn by Judge Dillard, who sits on the far right of the bench, which curve like teeth below her actual teeth. The fate of straining to hear what Faisal’s lawyer, with his back to us, says to the judges. The fate of him perhaps saying that the government is asking the court to refrain from judging, asking the court to step back without knowing what it is stepping back from. The fate of proportionality, a matter of context. The fate of what is or is not a political question. The fate of the precedent called ‘al Shifa’, with which everyone seems familiar. The fate of a publicly acknowledged programme of targeting people who might be a danger to us. The fate of inscrutable acronyms. The fate of me totally losing the thread of the argument as we distinguish ‘merits’ from ‘standing’. The fate of what Faisal is seeking, which is now given as ‘declaratory relief’ (new phrase to me). The fate of ‘plaintiffs who have no chance of being harmed in the future due to being deceased’, a wording that gives pause. The fate of how all this may depend on her pearls, her teeth. The fate of the sentence, ‘We are really sorry, we made a mistake,’ which Judge Dillard utters in a hypothetical context but still it’s good to hear. The fate of the government lawyer who is blonde and talks too fast, using ‘jurisdictional’ many times and adding ‘as the relief sought is unavailable’. The fate of wondering why it is unavailable to say, ‘Sorry’. The fate of Judge Dillard’s invitation to the government lawyer to tell the plaintiff how he might ‘exhaust all administrative avenues of redress’, as the government claims he should have done before bringing this case. ‘Where would he go?’ Judge Dillard asks with apparent honest curiosity. ‘If you were he, where would you go?’ The fate of our bewildered conversation afterwards about why she said this, whose side she is on, what she expects Faisal’s lawyers to do with it now. The fate of the tuna sandwiches eaten with Faisal while debating this. The fate of his quietness while others talk. The fate of his smile, which seems to invite the soul, centuries ago. Serving tea, let’s say, to guests. The moon above them. Joy. The fate of disinterestedness, of joy, of what would Kant say, of not understanding what kind of thing the law is anyway, for example in its similarity to mathematics, for they both pretend to perfect objectivity but objectivity is a matter of wording and words can be, well, a mistake. The fate of the many thoughts that go on in Faisal when he is quiet, or the few thoughts, how would I know? The fate of the deep sea diver that he resembles, isolated, adrift. The fate of him back in his kitchen in Montreal next week or next year, sitting on a chair or standing at the window, the moon by then perhaps a thin cry, perhaps gone. The fate of simplicity, of randomness, of homesickness, of dead ends, of souls. Who can say how silvery it was? Where would he go? Sorry?

Published in the London Review of Books
Vol. 39 No. 6 · 16 March 2017

I was once given this poem as the introduction to a writing exercise. Write or re-write a paragraph of your work-in-progress beginning every sentence with the fate, our tutor said. Notice how commencing with these words changes the way you shape your story. Notice what impact fate has on your narrative.

I do not like fate. I refuse fate. I want to scream at fate to fuck off.

I do not want to think about the fate of the earth, the fate of me. I especially do not want to think about the fate of you.

I do not like fate having an impact on my narrative.

And yet. Here we are.

The fate of me. The fate of you. The fate of the hospital where you are having your chemo. The fate of the doctors. The fate of the nurses. The fate of the specialists who are administering your treatment. The fate of the apartment in our COVID capital. The fate of the foundation that’s provided our accommodation. The fate of my psychologist who keeps asking “are you eating?” but how could I be eating? The fate of the words intensive protocol, neurotoxicity, and treatment related complications. The fate of having to learn another medical language in the middle of a pandemic after already learning the language of the pandemic. The fate of how all of this depends on limited evidence.

And so, I say.

Fuck fate. Fate will not shape my story. Or yours.