Second Winter

February 4, 2023February 5, 2023 / 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.

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.