How To Move A Safe

February 10, 2023February 10, 2023 / Tash / Leave a comment

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.

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.

2023

December 13, 2022December 13, 2022 / 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.

Once Upon A Time

November 29, 2022 / Tash / 4 Comments

I used to write here almost daily–until, I didn’t; for oh so many reasons.

I became aware that certain people were reading. I became more interested in writing for publication. I became conscious of and conditioned to not write for free.

And yet.

Writing here is, and always was, about more than just me. It was, in so many ways, a conversation.

Blogs are not really the same thing they were in 2010 when I first started. And yes, at some point, I will probably promote my Substack.

But until I commit myself to writing consistently enough to have a Substack, this will have to do. And anyway, it’s the conversation I miss the most. I don’t know if people will comment anymore. I don’t know if that’s the done thing. But I’m back to find out.

Today, a poem appeared in my feed.

WATCHING MY FRIEND PRETEND HER HEART ISN’T BREAKING
by Rosemerry Wahtola Trommer

On Earth, just a teaspoon of neutron star
would weigh six billion tons. Six billion tons.
The equivalent weight of how much railway
it would take to get a third of the way to the sun.
It’s the collective weight of every animal
on earth. Times three.

Six billion tons sounds impossible
until I consider how it is to swallow grief—
just a teaspoon and one might as well have consumed
a neutron star. How dense it is,
how it carries inside it the memory of collapse.
How difficult it is to move then.
How impossible to believe that anything
could lift that weight.

There are many reasons to treat each other
with great tenderness. One is
the sheer miracle that we are here together
on a planet surrounded by dying stars.
One is that we cannot see what
anyone else has swallowed.

This is the original version but it seems, edits have been made. And the below circulates in existence, too.