Music Monday | Anything Can Happen – Tors

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.

How To Move A Safe

When I get in my car, my phone immediately connects to the Bluetooth. Usually, the audiobook I’ve been listening to begins to autoplay. But every now and then something glitches and I receive a random throwback to the iTunes library downloaded on my phone. There is not a lot of music on my phone—only around six hundred songs or so—but they range from Rachmaninoff concertos, musical theatre and TV soundtracks, through to my preferred genre; indie folk. Tonight, instead of my book, the last refrain of Walk Alone began to play.

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For the last two nights, I’ve been outside between 10 pm and midnight with my telescope, waiting. Trying to catch a glimpse of the green comet. But the last two nights have been too cloudy. Tonight, I am back at work, and afraid I will miss the once in 50,000-year event. It will disappear from view tomorrow night and I will again be here, at work. I am trying to not be too distressed about it. Except I am. I want to be one of the relatively few (comparatively) people on earth who get to see the comet with their own eyes. I’ve seen plenty of pictures. But that’s not enough. Armed with new terminology, astronomy would be considered one of my special interests.

I have begun making lists of memories, events, and behaviours that may be relevant to my assessment; you could say autism and its diagnostic criteria have also become a special interest.

Just as G’s CNS lymphoma became a special interest.

In three and a half weeks, he will have an MRI. It’s been a year since his last. I’d like to believe my anxiety about him experiencing a recurrence of the cancer will reduce if the scan is clear. But I’m almost positive it won’t. I want us to have a more normal life. I want us to be able to do things. (Do I?) I want to be able to take my mask off. (I don’t.) But it feels like I should say I want these things. That I should want these things.

One of the guys at work asked me when I would feel safe taking off my P2 mask. And I answered that I would only do it when G’s immune system returned to normal functioning.

In truth, I love this mask. I mean, I love not being sick with anything, that’s great. But what I love more is no-one seeing my face. No-one seeing my mouth move as I run through conversations in my mind. No-one seeing the faces I make when I sit quietly at my desk, processing information in my head. I love it and I never want to take it off.

I have told a few different friends, now, that I might be autistic. And almost all of them have responded with some version of “oh, yeah, that makes sense” which has been validating. So much so, that I have wondered whether seeking a formal (expensive!) diagnosis is necessary—but without it, I don’t feel that I have the right to call myself autistic. Just as without my diagnosis of anorexia, I never felt I could say I had an eating disorder. I fluctuate in my thinking; between not wanting to pathologise the myriad of human behaviour styles and experiences but also in wanting validation that my lack of ability to communicate easily has impacted my life and I’m only now starting to understand why: That there’s not anything wrong with me (though people might say there is) but that I probably just process the world and everything in it differently to others.

What I wonder the most, though, is how I have been able to identify and celebrate these differences in others, while completely missing (and misrepresenting) them in myself? There is a grief in that—in how hard I have been on myself for not understanding, for failing at relationships and communication—that will take time to process.

A few years ago, in the middle of a Sunday afternoon, G was in the family room on his bike trainer about to start a three-hour virtual race on Zwift. He was warming up, pedalling slowly, as the competitors gathered at the on-screen starting line.

“Can we move the safe?” I asked him, having wandered out from our bedroom.

I’d been reorganising our ensuite (master) bathroom and on the floor in a weird little alcove that housed the electrical switchboard was a small safe. The alcove was large enough for a set of shelves where we could store the towels and toilet paper and I wanted to put the safe in the walk-in robe so the space was useable.

He fiddled with his heart rate monitor, glancing occasionally at the race timer countdown on the screen. “Sure.”

I’d already measured the recess and found a set of shelves online that were in stock at a local budget hardware department store that would fit in the space. He would be busy on the bike for hours, enough time for me to run out, buy and build the shelves, install them and clean up. It was perfect.

I went back into the bathroom, pleased I could progress with my project, and began emptying the contents of the safe into a shoebox. Once I had everything out, I attempted to lift the safe but couldn’t. I noticed the problem immediately. It was bolted to the floor. I unscrewed the nuts from the inside of the safe and popped them in the shoebox with everything else.

Again, I tried to lift the safe, and while I could now raise it off the ground, I could not remove it from the alcove. The alcove had a small lip that wrapped approximately a quarter of an inch across the front of the safe, making it so tight that I could not tilt or turn the safe in such a way as to remove it from the space. I marched back into the family room.

“You said we could move the safe!!!” I said, loudly (and completely unaware).

“Yeah, you can,” he replied panting and puffing, the race now in full swing, “do whatever you want with it, it doesn’t worry me.”

“I can’t!” I said, even more loudly than before. “I can lift it, move it up and down, but it doesn’t come out of the alcove. Why did you say we could move it if we can’t actually move it?”

The conversation disintegrated. He was pedalling, racing, and through gasps and huffs, said he was done discussing it. He didn’t want to talk about it while he was trying to race. I didn’t want to do anything except talk about it. I wanted it resolved, and I wanted it resolved now. I felt betrayed. I did not understand why he would say I could move the safe, if I could not, in fact, move it.

I marched back into the bedroom and unleashed my anger in a text to a friend. Before her reply had come through, I already knew what I had to do. I had been using a tool for a few years–a process called “The Work” by Byron Katie. And I began the Judge Your Neighbour worksheet.

By the end of the worksheet, I had calmed.

G has not, nor will ever, intentionally hurt me. He has, on occasion, hurt me accidentally but I know these instances are exactly that; accidental.

And in that same way, by working through the questions Byron Katie has you ask yourself in The Work, I realised that we had been discussing two different questions.

My original question was “can we move the safe?” but what I actually meant was “is it physically possible to move the safe?”

He answered “sure.” An affirmative.

Because the question he heard when I asked “can we move the safe?” was “do you mind if we move the safe?”

One question; two very different interpretations.

That was why I became so distressed when I was unable to move the safe; because I had understood that he said “sure” to my indirect question of “is it physically possible to move the safe?” meaning that when it wasn’t possible, I felt he’d lied.

When he got off the bike some hours later, I explained all of this to him, what I’d worked through and what I believe had happened with our communication. Since then, when we find ourselves in a sticky confusing communication situation, we often look at each other and ask, “are we trying to move a safe?”

And then we start over and clarify exactly what it is we are trying to communicate. It doesn’t solve everything but it has helped having a shorthand signal to suggest we might not be looking at things from the same frame of reference.

I am not sure exactly what G thinks of it all—this autism thing. He says he doesn’t care, that it doesn’t change anything. That I am who I am and he loves me. And that if I am autistic, then that is part of what makes me, me. Of course, it shouldn’t change anything. But I still worry it could. Studies have shown that in cases of serious medical illness there is a significant gender disparity in the rates of separation and divorce (partner abandonment) if the woman within a heteronormative relationship becomes ill. Partner abandonment also occurs in instances of chronic illness. Because caring for a partner with a significant or chronic illness can be exhausting and debilitating. And while autism is not the same as a significant medical or chronic illness, and while I have mostly adjusted to neurotypical ways of life and have found work-arounds for the areas I find difficult (no matter how ineffective or exhausting), it does feed into my anxiety that a formal diagnosis could change the way he sees me and our relationship.

I would like to believe it will make things better; that a more thorough understanding of myself can only improve how we relate, that it will help us both navigate conversations more effectively.

I would like to believe that it will help us move more safes.

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 | Suspirium – Thom Yorke

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 Final Countdown – Europe

We’re leavin’ together
But still it’s farewell

Tomorrow, it will be six months since I took G to the hospital for strange stroke-like symptoms. We didn’t know, that night, that it would be months before he’d leave a hospital again. We didn’t know that we’d have to relocate our lives, in the middle of a pandemic, to the covid capital of Australia for his cancer treatment. We didn’t know it would be more than half the year–in fact, into a whole new year–before we’d be back to our home.

And maybe we’ll come back
To Earth, who can tell?
I guess there is no one to blame

And, while we are on the final countdown to going back later this week or next week, we are are still another six months from the end of rehab. Tomorrow, he has a total hip replacement; osteonecrosis, cartilage destruction, and collapse of the femoral head the result of a joint infection after his second round of chemo. And then, the real work begins.

We’re leaving ground (leaving ground)
Will things ever be the same again?
It’s the final countdown
The final countdown