relationships

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.

The Reader

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The tectonic layers of our lives rest so tightly one on top of the other that we always come up against earlier events in later ones, not as matter that has been fully formed and pushed aside, but absolutely present and alive. I understand this. Nonetheless, I sometimes find it hard to bear.

Bernhard Schlink, The Reader

My eldest step-daughter lives in the small two-bedroom house that is attached to, but separated from, our main house by a double garage and a small sunroom. Next week, she’s moving to Queensland to continue her university studies (a masters) in psychology and education. While we were eating dinner the other night, G asked me whether I thought that neurodiversity was increasing or if it was just becoming more widely recognised, and therefore accurately diagnosed, and whether that would offer my eldest step-daughter more extensive career opportunities.

Naturally, I looked for statistics. Data is the first thing I turn to for knowledge, understanding, and comfort. In 1997, approximately 1 child in 2,500 in the USA was diagnosed with autism. In 2000, the CDC began monitoring prevalence rates and by 2017, that number was 1 in 68 (Southwest Autism Research and Resource Centre). Although it was noticed that prevalence rates were increasing, long-term expectations and outcomes for adults were unclear. Most group living homes, which had previously and frequently been part of the care of autistic people, had closed by the end of the 1980s.

Despite the wording indicating that more people are being diagnosed today, there is no distinction made as to whether this is because there is a greater understanding of the diagnostic criteria thus more people are being identified, whether it’s because the diagnostic criteria for multiple conditions were rolled into one categorical diagnosis of Autism Spectrum Disorder in the last DSM-5 in 2013, or if the number of people who experience neurodiversity in the form of ASD is increasing within the population. The likelihood is that it’s probably both; prevalence is increasing and awareness and recognition is increasing, thus leading to higher levels of diagnosis.

But regardless of the cause, if the number of people being diagnosed is increasing, it does allow for more opportunities to review and amend an education system that is largely failing the neurotypical community, and barely managing to help (and more frequently harming) the neurodiverse community. I advised that schools such as the Steiner School do already exist and function with a very different ethos to traditional education but that there’d certainly be room for other models if that was the area that my step-daughter was interested in pursuing.

My ex-partner’s current partner’s children (read it again if you need to) attend a Steiner School and I broadly explained the difference between their style of education and the traditional school system and curriculum. I am still friends with my ex, M. He is known as “the nice one” by my step-daughters, and I have explained on more than one occasion that we separated not because anyone was abusive or toxic but because we simply wanted to go in different directions. He was very good to me–better than I deserved–at a very difficult time of my life and it pleases me greatly to see him happy with his partner.

Unfortunately, he and I also have “cancer/caring for someone with cancer” as something in common. Back in September 2019, his partner received a diagnosis of metastatic breast cancer. She was given a prognosis of 12-18 months. It’s been three and a half years and, while she is still in treatment, she is also still here. In addition to her standard medical treatment (surgery, radiation and chemotherapy), she also uses complementary therapies. She had some sort of testing done by a company called Genostics which gave her additional suggestions of other therapies that may reduce the cancer (she has multiple tumors in multiple organs) or, at the very least, keep it in a holding pattern. At the time of her diagnosis, she was told she probably wouldn’t see her son’s sixth birthday but she’s just celebrated him turning eight and the cancer is not yet advancing.

Overall, cancer survival rates are improving. Unfortunately, cancer diagnoses are also increasing. And especially in people who have no family history of cancer. In 2018, a few weeks after my colleague was killed in a workplace accident, a close relative was the first person in our family to be diagnosed with cancer. His cancer is generally viewed as having reasonably strong survival rates but various treatment complications not dissimilar to G’s put that at risk. But he, too, is still here–five years on. Ten years ago, G would not have survived either his cancer or his subsequent neutropenic sepsis but we are now at two years. Medicine and miracles happen every day. Sometimes those stories of survival can be disheartening, though. When G was first diagnosed and I started the process of caring, I joined a couple of groups on facebook for support. They were “generic” carer’s groups, though, and I felt very out of place being so young (comparatively), caring for my partner rather than children or an ageing parent, and not being in financial distress due to our health insurance and workplace sick leave policies. We were extremely fortunate and each of our respective companies looked after us.

At the time, the idea of talking to other people who were dealing with my specific situation–or even just journaling about my specific situation–was not possible. My therapist wanted me to but I all but quit writing for eight months. I could not write about hope and I absolutely could not write about death. Instead, when I had it within me, I wrote about the stars.

There are so many ways in which our stories overlap; in which the tectonic plates of our selves bump up against other people, their experiences, and our own past. It is not fair that so many people I know have to process a partner or parent experiencing a cancer diagnosis and the caring that comes along with that. It is not fair. I understand this. Nonetheless, I find it hard to bear.

It is difficult to know how much to share, here in this forum; I am not writing a book about the year of cancer (yet) which is a different process to blogging. This is open-ended. There is no target word count, no theme to stick to, and no plot or outline to follow. Which means I ramble. Jump around topics, touching on whatever is floating around my mind at the time I sit in front of the keyboard. And yet, week after week, there are readers; you are here. Thank you.

I think about the reader. I care about the reader. Not “audience”. Not “readership”. Just the reader. That one person, alone in a room, whose time I’m asking for.

Jeffrey Eugenides, The Art of Fiction (Interview), The Paris Review

Very Virgo

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Here’s a thing I say frequently:

It’s an observation, not a judgement.

I say this because I comment on things without thinking of the impact of those comments. I share information that I find interesting that is never meant to be a slight on someone (either directly or indirectly) but can often be taken in such a way. I notice and observe behaviours—out loud—and don’t often consider the consequences to the person about whom I’ve made those observations. I ask why; why would you do that? Which people find offensive. Which, I’ve learned, they interpret to mean I’m judging them/their choices. Which I’m now learning could be part of autism—and not because I’m very Virgo.

An image of a tweet by @spikeeinbinder that reads "gonna stop telling ppl i'm autistic, it just alienates me more! now i'll say i'm overwhelmed and leaving this party where everyone is drunk, it smells like febreeze and cat litter because I'm a Virgo, they'd be like yesssss earth sign! go home and alphabetize something, queen!"
Image of a tweet by @spikeeinbinder

Virgo people are frequently maligned for being pedantic, judgemental, aloof, hypercritical, neurotic, ruminative, unwilling to adapt, inflexible, hard to satisfy, too detail oriented, and for always wanting things their own way. While they are worded differently, I’ve noticed many of these traits also appear on the list of symptoms of autism. I’m not making a comparison between astrology and autism–mostly because I don’t believe in astrology. But I now find it troubling that many of my behaviours, which may have been the presentation of autism, I have minimised and laughed off as “just being a Virgo”.

When I first began living with G, he struggled with my constant comments—which he took as criticisms. That wasn’t entirely my fault. Historically, he’d felt belittled and criticised in previous relationships, so his reaction was from a place where comments were not neutral. But for me, attempting to understand why other people do the things they do, or say the things they say, happens out loud. With questions. With comments.

But not with malice. Not with judgement.

My comments do not come from a trait of criticism but instead, from a state of curiosity. An attempt to process the world and the people in it.

I want to know the why of everything.

It’s one of the things that makes me good at my job.

But it doesn’t make me good with people.

And so, after yet another comment, I find myself repeating: it’s an observation, not a judgement.

And, when something I say comes across the wrong way, I’m sorry.

How To Move A Safe

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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.

Second Winter

/ Tash / 2 Comments

Last night while walking the dog around the neighbourhood, the smell of wood smoke permeated the atmosphere. February is typically the hottest month of summer in Australia with temperatures between 80 and 100F. Instead, as a light rain fell and the temperature was 50F, people were lighting their wood heaters.

Today is supposed to be decompression day after my shifts and, also, my mother’s visit. But I do not have much of a reprieve, as I have already agreed to overtime tomorrow night and have a four-hour work safety meeting on Wednesday, before starting my shifts again on Thursday night. Which means Tuesday will be my only official day off, as Monday has now become a zombie day.

A few nights ago, unable to sleep, I was hunting for an old blog post; something I wrote a long time ago that has been on my mind the last few days. I couldn’t find it then but I did find a post about the dog I’m looking after. I’ve been friends with the dog’s owner for over eleven years and in the post, I wrote: he told me the dog cries when I leave. I’m not sure why this stood out to me but it did. I had forgotten he told me this but I have always had a connection with the dog.

Tonight, I found the post I was looking for. I wanted to find it because it referenced two very specific scenarios, which, in my current state of exploring what autism looks like in women, seemed relevant.

An excerpt from my blog, first published in July 2011 (on the same day Goyte released Somebody I Used To Know with Kimbra):

I’ve been thinking about it for a while. The disconnection I have between experience and emotion. Is it odd, do you know, to be diagnosed with bipolar, and to have depressive and hypomanic episodes but not really feel all that different no matter on which end of the spectrum I seem to fall at a particular point?

I’ve spent a long time closing things out. People, mostly. Or at least, a connection with people. A friend reminded me recently of a conversation we’d had on my balcony. She said that she was pouring her heart out about an old friend of hers who’d moved to South America and whom she’d been planning to visit later in the year. And this day, or perhaps the day before, he’d asked her not to come.

She relayed that she’d laid all this bare on the table in front of us, over a glass of wine and a cigarette and had told me how upset she was. And then she said, you said “Isn’t the pattern of the lights on the apartment building across the street interesting?”

She was angry at me. She was angry that I’d feigned interest, pretended to care…but had, it seemed, been bored by her conversation. I was surprised by this. I’d not been aware of it at the time, that she was upset, not just about her friend’s request, but by my response.

I apologised. I wasn’t bored, I said. Nor pretending to care. I simply didn’t know how to respond. I explained that I didn’t connect with the feeling that she’d been having. I wasn’t able to relate to it. I don’t have feelings like that.

This episode with my friend has only served to confirm my suspicions that I do not feel things the same way normal people do. I do not see things or read things the way that others do. I do not. I don’t even know if this is a problem. It’s never been for me, but it seems it is for others.

I’ve been working with my new therapist now for almost 6 months. Every now and then, I’ve gotten teary during an appointment. Her first question is always “What’s going on for you right now? What emotions are behind that?” and my reply is always the same. I don’t know, I say. I just feel confused.

Last session, she reminded me of an appointment I’d had a few weeks earlier. My friend had moved overseas. I was…crying. But I couldn’t explain why. The feeling(s) that should have accompanied that reaction were missing. Absent. She said that something strange had happened during that session. She said that when she’d questioned me about it, I’d looked at her directly and held her gaze. Most people, she said, would have looked away, but I stared directly at her and “locked on” as she put it. She could not read me at all.

We discussed my perceived inability to feel. I asked her if she thought that it was possible to lose the ability to feel, that is, if you did not use it – this emotional thing…does it die? …in a similar way to the way that a muscle, when not used, atrophies. Because, I said, I don’t know that it’s even possible for me to feel.

Do you want to? she asked.

No, I said, not really.

Would it be helpful to talk about feelings from an intellectual perspective, she said, instead of from an emotional perspective?

Yes, I said. Probably.

And so we’ve started. At my last session, we discussed the emotional response. How there is a triggering event, the internal things that happen within your body, physiological responses, neurochemical responses…and the visible external cues that people see.

Except that I don’t see them in you, she said. When I think you are upset, that is when you’re hardest to read.

Sure, I said. That makes perfect sense. Why would I let you see that you’d upset me? Or that I was angry? That all just gets locked in…if it’s even there in the first place.

But I have a question, I said. What causes the shaking?

Shaking? she said. What do you mean?

Well, whenever I have to talk about something I find uncomfortable, I shiver. It feels uncontrollable. It feels like it’s visible to everyone. Sometimes it is. Sometimes I shiver and shake so hard that my teeth chatter. But I just look like I need another blanket.

She’s going to look into it.

My homework now is to keep a diary. To record the situations I’m in when I notice the shaking. What has happened. Who am I talking to. What are we talking about. To see if we can identify a pattern.

I like patterns.

Particularly of lights on buildings.

Earlier this afternoon I sent the dog’s owner a message and told him I’d been exploring the possibility I have autism and have referred myself for an assessment. He said: Well, as someone who knows you, and someone who spent two years working closely with people with autism, there could be something in this.

Co-Sleeping

/ Tash / 3 Comments

Today I decluttered the spare room. Technically, it’s one of two spare rooms. But the other room isn’t really spare, it’s my room. With my bed. And I use it when I’m on shift; I sleep in it during the day and sometimes at night. As G is a light sleeper, he doesn’t like being woken at 5am when I have to get up for work, especially if he has to get up an hour and a half later to get ready for his work–if he wakes with me, he won’t go back to sleep. It’s a little better on weekends if he has no specific time to be awake. So at times, I sleep in my room.

I’ve just finished reading a book called Cat Lady. In it, the MC likes to sleep in a separate room to her husband, so she can sleep with her cat. Some friends overseas are buying a new house so that they can each have separate bedrooms plus a spare room. A former work colleague shared that he and his wife have separate bedrooms, too. I don’t have a separate bedroom because I like it, I have it out of necessity. I would much rather sleep in the same bed as my partner. But I have recently started to wonder about permanent co-sleeping; when it started, when it’s deemed ok and when it’s not. These thoughts were prompted by a friend who’s split from her narcissistic ex and whose child still co-sleeps. After her most recent weekend, the child informed my friend that she sleeps in the same bed as her dad and her dad’s new partner.

This made me think about children and co-sleeping because I took every opportunity to sleep in my parents’ bed when dad was working night shift. And I never once considered whether my mother wanted to share her bed (her only alone time!) with me when dad was at work. I would have been well into my teens before I stopped doing this. But parents co-sleeping with their children is still viewed as a bit fringe, and most people expect it to end before the child turns 10. I have always hated sleeping in a bed by myself. And that was what prompted these thoughts. Adults are often questioned if they do not want to sleep in the same bed as their partner. Their very relationship may be called into question if they prefer sleeping alone. And yet, children are expected to do it from a young age.

I like sleeping next to someone because it provides me with feelings of safety and security. That feeling is the same, whether I remember sleeping in my parents’ bed as a child, or whether I think about sleeping next to my partner now.

There are so many things children are expected to do that adults aren’t. Children are expected to know how to regulate their emotions even if they’ve never had a good example of that modelled, they’re supposed to know how to generate their own feelings of safety and security when banished to their own dark bedroom, they’re supposed to only speak when spoken to, play quietly and not be raucous, not interrupt when other people are speaking, always be polite and remember their manners. (Or perhaps that was just in my family?) And yet, these are often things that adults are not required to do.

I want to sleep in the same bed as my partner but I do wonder–why is it ok for adults (actually deemed “normal”) and not for children (deemed “abnormal” especially after a certain age)? And why do we struggle to understand or offer acceptance and compassion to those who want to do something different?

White Light

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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.

Brain Jumps

/ Tash / 1 Comment

I am in bed with my poetry and my books. And my cats.

***

Tonight as I was stacking the dishwasher, I had a strange sensation before an image from the film Nell shot back to me; of a wide-eyed woman, alone in a cabin in the woods.

How nice to live alone in a cabin in the woods.

But a woman, alone in a cabin in the woods, must be a witch.

How nice to be a witch in a cabin in the woods.

***

At the beginning of my senior year of high school, when I was 16, my parents separated. My mother never re-partnered. And, to this day, I don’t believe she ever even dated. My father. My father, on the other hand. I don’t speak of my father. Or to him.

But my mother.

When my parents separated, my mother was four years younger than I am now. She had two teenage children; me, and my brother, three years younger than me.

In my memory, I assume she was too busy to date. But that can’t be true. Because she danced. Many times a week. In a line, with others. She took up this type of dancing because it did not require a partner. Perhaps, neither did she.

In my memory, I assume she never stopped loving my father. Even though she left him. But I know my father; so this can’t be entirely true, either.

In my reality, what is perhaps most true, is that I didn’t think any of these things about my mother. I didn’t think about her or her happiness at all.

When G and I moved back home from the Leukaemia Foundation apartments last year, we had G’s elder daughter over for an outdoor dinner. At one point, the conversation became morbid and I shared the fact that if G dies before me, I do not intend to re-partner. His daughter, still blissful in the first year of new love, was shocked. But won’t you be lonely? she asked with genuine concern.

It’s possible.

But I wouldn’t have to take care of anyone except myself. And my schedule and time would be entirely mine.

Perhaps that is why my mother didn’t re-partner. And if that’s the case, I may have more in common with her than I thought.

2023

/ Tash / 2 Comments

This is not a diary.

And also, it is.

I barely write in my actual diary; it sits on my side table untouched—because to write would require I feel. And to feel is overwhelming.

Instead, I stare at twelve screens for twelve hours at a time. That is my job.

I do more than stare. The screens are filled with trends and graphs, and pictorial representations of mechanical systems and items of plant. I monitor this plant, operate this plant—pumps, valves, mills, conveyors, a steam-driven turbine, and most importantly, the generator attached to the end of it that makes megawatts of electricity.

And I try not to think about the pandemic.

At work and across the country, people are going about their normal business. The pandemic, which once caused the complete lockdown of Melbourne for many months, has been largely forgotten. People are getting sick, yes. It’s inconvenient, yes. But it’s not stopping most of society from expanding their lives and activities to pre-pandemic levels.

There are only a few, now, for whom life has not returned to normal. And some of those, for whom, a small bubble was their previous life.

I sit at my control panel wearing two N95 masks because we’ve been told that one mask may not offer complete protection. And now that they’re no longer mandatory, I’m the only one wearing one. Two.

Although these may seem like extreme precautions and it would be easier to stay home unless absolutely necessary, I regularly say yes to overtime because I have no other life. I pretend that working so much is why I do not write. I do not write, though, because to write would require I think, and all I can think about is the pandemic.

Editors don’t want stories of the pandemic, anymore. (Did they ever?) We are over them. We do not want to be reminded of all we lost. We are post-pandemic, now, haven’t you heard? But my husband and I are not post-pandemic.

In the most recent edition of my writer’s centre magazine, the non-fiction entry that was runner-up in their competition was a pandemic story. So, I ask myself, are we really over them? Because stories of the pandemic are almost always stories of grief. The pandemic has not ended. And grief won’t end, either.

At the end of this month, it will be two years since my husband completed treatment for a rare and aggressive blood cancer. But then, it seems as if they almost all are. There are over 80 different types of lymphoma alone, one of which—primary central nervous system lymphoma—was his diagnosis. His still severely immunocompromised condition does not allow us to return to normal.

The details, though, are finally beginning to fade. The immediacy with which I can recall specific blood counts, dates of treatment, chemotherapy regimens, and the resulting complications has dissipated. Now, I must look at my calendar to remember everything except the most traumatic of events. Many of the events have blurred. Specifics have evaporated.

During his care, I emptied I don’t know how many bottles of urine in the months he couldn’t walk. I learned how to take obs, administer medication, give injections, connect and disconnect IV bags of fluid to his PICC line/port and other things I thought you needed a nursing education for. I kept meticulous records to provide to the doctors on each hospital admission.

Once, at a late-night emergency admission, after I relayed all the details of his latest treatment, the new symptoms, and the recent blood work results, the on-call haematologist asked me if I was a doctor. I shook my head. I’m not, of course. I just have a background in chemistry, and I sought safety and certainty in the data.

Before his diagnosis, cancer seemed an unlikely intruder. While it would be realistic to describe both of us as middle-aged, we were in general good health, ate a balanced diet, and exercised regularly. And although his mother had experienced breast cancer in her mid-life, she is still with us now, in her late seventies.

For months I blamed myself for giving him cancer. (It doesn’t work like that.) I had asked him to get the tooth implant. (At the beginning of his treatment, someone told me that oral health is linked to your immune system and his cancer is a cancer of the immune system.) Or, I must have given him HIV. (PCNSL is more prevalent in people with HIV—so I made my doctor give me a request for a blood test for HIV serology and was tested. Again. Found negative, again.) I was sure that something I’d done, or not done, had made him sick.

At two years, with no recurrence of the cancer, his chances of long-term survival increase a little. But with cancer, long-term survival is defined as five years. Five years. That’s the amount of time between the birth of a child and their entry into kindergarten. And while that time may seem interminable to new parents, it passes in mere moments. We are now almost halfway there. Relapse occurs in fifty percent of cases within two years. Only thirty percent of affected individuals survive more than five years post-diagnosis. As for anything longer than that? Fifteen to twenty percent of fortunate patients have no recurrence. The average survival after a diagnosis of primary central nervous system lymphoma is three years and eight months. Even my cat is eleven.

Until recently, the fear of his illness returning was safely stored away; buried somewhere in my body while I got on with the business of caring and working. I’ve been able to ignore the thoughts. The feelings. The overwhelm of loss. But the anxiety is starting to pop out in unmanageable ways. I find myself gasping for breath in hallways through blurred vision. Formerly suppressed sobs are forcing my shoulders to shudder, even as I swallow them back down. The constant pain in my chest is not a heart attack. Nor indigestion. Because it gets worse when I think about hospitals.

And so, in 2023 (because there is no time left this year), I have to do the only thing I know that will save me.

I have to think. I have to feel. And, I have to write.