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

Je travaille beaucoup. I work too much.

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

Work is a safe space.

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

What would you say your biggest weakness is?

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

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

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

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

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

I am at work on overtime tonight.

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

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

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

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

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

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

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

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

Not me.

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

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

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

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

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

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

The Reader

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

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.