mental health

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.

Second Winter

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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.

Zombie Day

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The 24 hours between the end of our second night shift and the beginning of our first day shift are a blur. You must sleep enough in the morning so that you can function in the afternoon and evening but not sleep so much that you do not sleep that night and therefore cannot function the following day at work. This is why I refer to this 24 hour period as zombie day.

In the last few years, I have expended considerable effort to improve my night-time sleep as a means of managing and maintaining my mental health. I have had years where I’ve slept as little as three hours per night for months on end and the occasional five hours of sleep seemed a blessed miracle.

It is well-known that shift work is damaging to your health and this is largely due to the fact that shift workers tend to sleep two to three hours less per sleep than their dayworker counterparts. But I was born to be a shift worker! Sleep has always felt better for me during the day than at night; I feel safer sleeping during the day, therefore I wake less and spend more time in deep and REM sleep (so says my fitness watch). On zombie day, I try to go to sleep earlier than I do after my first night shift, around 7.30am, and only sleep for about four to five hours. Without an alarm, I would sleep all day—a full eight hours plus. And if I get more than six hours on zombie day, I’m ruined for the following day as I will not sleep at all that night.

Historically, I’ve had a difficult time sleeping when alone in a house. This dates back to before my teens. I have needed another person in the house to feel secure, and when alone, I’ve sleep with the lights on. But a couple of weeks ago, G went interstate (north, almost 20 hours to Queensland) to look at apartments and holiday homes. I had to stay and work. This would normally cause significant anxiety, further inhibiting my ability to sleep but I was surprised to find that this time, I enjoyed the time. This is not something I’ve ever experienced before and although I was looking forward to G’s return, the week and a half I had on my own was refreshing.

When I feel safe, I rarely wake to even the loudest of noise. The surrogate dog can bark and bark, the hoons can rev engines and do burnouts at the intersection by our house, the person learning to play the drums next door can bang as loud as they like and none of these things will wake me. But when G required full-time care, and I slept in the room next door so as not to contaminate or infect him, he barely had to whisper my name and I was awake, alert, and ready for action. It is remarkable what the body and brain will do when necessary. Now that he is well, I have reverted to more sound sleeping patterns. But I still wake often in the middle of the night. Research shows that sleeping in a solid single block for eight-ish hours is a relatively recent development and may not be as beneficial as the previous bi-modal sleep pattern.

G, on the other hand, is a very light sleeper. The slightest sound, minutest movement, or beam of light will wake him no matter what stage of sleep he is in. And yet, he still seems to sleep more than me.

Today, I did not go to sleep early. I messed around until about 9am after arriving home at 7.15am. And then slept until 1.30pm. Which isn’t a lot of time but it means I rose later than I normally would so now–at 11.15pm–I’m not tired. G has already gone to bed but I often sleep in my bedroom while I’m on shift so that I don’t wake him when I get up to get ready at 5am. Otherwise, if I do, he will not get back to sleep.

A few months ago, we read a book by Olivia Arezzolo about sleep types called Bear, Lion, or Wolf. I am a wolf, and the only positive thing the book said about wolves is that they are pre-disposed to being great shift workers due to their alertness overnight. G is a bear these days but used to be more of a lion. We are practically opposites.

When he was in hospital, and my stress levels were so high I went to the hospital myself to make sure I wasn’t having a heart attack, I tried everything to sleep. I tried listening to special frequency music, I tried herbal sleep teas, I tried meditations, and I tried night noises. Eventually, I settled on a routine where I listened to a meditation mantra and then played 12 hours of “night noises” like crickets chirping by a crackling fire in the forest. Light rain falling, frogs ribbitting. Anything to calm me down.

There are things I want to say about sleep–about dreams–about the places we go in our subconscious. But it is almost midnight and I need to be up in five hours. So it will have to wait.

Music Monday | Suspirium – Thom Yorke

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G says this music is boring. Running errands on the weekend, and listening to this album, he asked if we could change it–put something on that wouldn’t put him to sleep. I could not explain how multi-layered the lyrics were to me, how it was anything but boring. I didn’t change the album.

On Sunday, he went for the first bike ride outside since his illness. Before cancer, he used to cycle hundreds of kilometres per week. Ride for hours at a time. Race. The cancer (PCNSL) attached itself to his cerebellum; the part of the brain that is responsible for coordination, balance, language, attention, your nervous system. Damage to it can make it difficult to judge distances, spatial orientation, and can inhibit motor skills and speech. His balance was ok while he was on the bike, he reported, but he did fall off when he tried to stop.

In the first year after treatment, tapering off the steroids caused many of the typical adrenal problems associated with withdrawal; severe fatigue, weakness, body aches, and loss of appetite. The rehab program provided by the occupational therapist of approximately a half hour a day of both muscular resistance exercises and balance exercises left him exhausted. But in this last year, his endurance, stamina and exercise habits have increased. He’s been riding the bike trainer almost every day, walking every other day, and has been more diligent with his balance training. More of that will be required if he wants to remain upright on the bike. I worry that he will break his other hip, or something else, if he falls.

There are so many ways our bodies can betray us. And so many forms of recovery. It seems, we are all recovering from something. So here I am, thinking about our bodies. And what they mean for our salvation.

2023

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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.

Music Monday | Hero – Mariah Carey

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We are still in Lockdown 5.0 in Victoria. I’m not sure how many weeks it’s been now. Two? No. Three? Like I said, I don’t know. So, I’ve reverted to spending hours consuming what I call “wholesome content” to keep me sane: Mostly YouTube–which is as close to a time machine as we have–and Mariah Carey, whose song Hero was released at the end of my sophomore year in high school.

I’ve also been reading, and have just finished The Believers by Sarah Krasnostein, and am now devouring Song of the Crocodile by Nardi Simpson. I’m still reluctant to call it reading, because I’m mostly listening on Audible; I don’t have the ability to sit still to read with so much anxiety coursing through my veins. But I’ve “read” more this year via Audible than in the last three years together, so that’s something.

And for anyone else who also needs a little lockdown pick-me-up, last year, the Phillip Island Penguin Parade was livestreamed during our 112 days of hard lockdown in Melbourne–and they are bringing it back from tomorrow night. The Speed Cubers on Netflix is a documentary about friendship and the fastest rubik’s cubers out there. And added recently to my rabbit-hole (and not on YouTube) is an Irish dancing group called Cairde. Apparently they have a TikTok, but I don’t, so I watch them on Instagram.

We are hoping some of the lockdown restrictions will be eased tomorrow. I’m hoping I’ll get the results of my 7th covid test that I had this afternoon. And, more than anything, I’m hoping they’ll be negative.

Music Monday | Here Comes The River – Patrick Watson

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It was my birthday a few days ago. Birthdays in 2020 are something different, aren’t they? I am sheltering in place in a small apartment in the “covid capital” of Australia aka Melbourne. But thanks to our state Premier’s leadership, the Chief Health Officer’s medical expertise, and my fellow Victorians (largely) doing the right thing, our daily case numbers have reduced significantly from more than 700+ cases a day a few weeks ago, down to less than 50.

But this isn’t where I was supposed to be for my birthday. Earlier in the year, I booked annual leave for the next few weeks. I had planned to be in New England, traveling first before arriving in Maine for the Camden International Film Festival with a friend.

But 2020 looks nothing like the plan I made in January.

Instead, I spent my birthday here with G, before having to rush him back to the hospital when a pain in his hip prevented him from walking. Scans indicated another infection. The news of a temperature spike after a procedure to drain fluid from the infected joint whacked me back into mid-August when he developed sepsis after his first round of chemotherapy dictating that he spend weeks in ICU in a critical condition.

We lurch from crisis to crisis, barely recovering from the last before a new one begins, with the original cancer somehow just a low background hum. Tonight, his temperature has settled. He is being flooded with strong antibiotics. Fluid is being drained.

I knew the cancer treatment and chemotherapy was going to be intensive. But nobody told me that it was going to be this hard.

Nobody told you that it was going to be this hard
Something’s been building behind your eyes
You lost what you hold onto
You’re losing control
There ain’t any words in this world that are going to cure this pain
Sometimes it’s going to fall down on your shoulders
But you’re going to stand through it all

Here comes the river coming on strong
And you can’t keep your head above these troubled waters

Here comes the river over the flames
Sometimes you got to burn to keep the storm away

Today, there is also a bonus song; I played this song as part of a meditation last night to remind me to get up, always.

Music Monday | Where Do We Go – Desiree Dawson

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The blisters on my cheeks where a face mask pulled tight across them for seven hours a day, twelve days in a row, have healed. It’s been a week since I’ve been allowed into the hospital. My visitorship was revoked as soon as my husband became stable again. It was disheartening for both of us but not unexpected having already happened twice before.

So I wait in anticipation of his return, in this small apartment that does not belong to me, and I have endless amounts of time to fret. Instead, I try to distract myself. I scroll, I clean, I read, I breathe. A circle of friends have organised themselves onto a roster to make sure someone calls me every day. At least once a day. Sometimes twice. Even, occasionally, three times if necessary. And it has been necessary. I am almost always ok until it is time to sleep, like now. It is then that I feel the low hum of anxiety that has been the background to my day start to rise.

And the only thing that helps me then is meditating in Love. Because in Love, I am reminded that we are all One. We are Connected regardless of time or space. In this connection, I can truly see that the Light in me is also the Light in everyone I meet.

It is difficult to focus on Now but it is all we have. And so I stay with it. With the uncomfortable feelings that rise, with the uncertainty of what might happen, and with the knowledge that the only place I can go from here is into Love. Because I am in Love, and Love is in me. And actually, it is all we need.

Where do we go, go from here
The present is cloudy, future filled with fear
The past is something we hold on too dear
So where do we go from here

Where do we go?
Where do we go?

But love is all we wanted
And love is all we need
Deep down in the dark is where we plant our seeds
Plant those seeds

I was given the sweetest treat when I started seeing myself in everyone I meet
You were given the sweetest treat when you see yourself in everyone you meet

Music Monday | Stars – Ayla Nereo

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Around us, a pandemic rages, but new daily cases are dwindling under the Stage Four restrictions. A curfew is in place from 8pm until 5am. This means you must be at your home between these hours unless you are working (with a permit), seeking medical care, or providing care.

It is fifteen minutes until curfew as I pull into the underground garage of my temporary home. The rain spatters on my roof and windscreen as the GPS announces my arrival. Although I’ve driven the same twelve kilometres twenty times this month to and from the hospital where my husband is critically ill, I still use the GPS to keep me company. I cannot stomach music.

During the day, you may only leave your home to exercise (for one hour maximum), to shop for necessities (one person per household, for one hour maximum), to work (if you can’t work from home and have an applicable permit), to seek medical care, or for compassionate reasons. You must stay within five kilometres of your residence.

Due to the nature of my husband’s illness, I am allowed to visit, provided I maintain full self-isolation. I do not work. I do not exercise. I do not shop for necessities. Some incredible friends are doing this on my behalf followed by a contactless delivery drop to minimise my exposure to the outside world. Anything that arrives gets doused in Glen20 (Lysol), spends five days in quarantine in the spare room, and is soaped or disinfected further upon opening.

When you leave home, you must wear a face covering unless you have a lawful reason not to.

I wear two; a particulate filter mask beneath a surgical or cloth mask. I do not know if this is safer. I just know it feels safer.

I leave my home only to drive to the hospital and sit by a bed on the days they allow it.

On the other days, I disinfect the apartment from top to bottom. Again. Just in case. But no-one comes in. And I do not go out. I phone a friend. I pace. I try to shake it out. I cannot sit still long enough to read. I cannot sit still long enough to write.

The adrenaline bath inside my body turns every abnormal event to terror. Is that tickle in my throat because I haven’t drunk enough water, or is it covid? Is that weird, red colour on my toes because I’ve been been sitting on them squished up on the couch, or is it covid? Is that shortness of breath, panic and palpitations anxiety, or is it covid?

I’ve had two covid tests. Both negative. And I’ve not been anywhere except the hospital and the apartment in three and a half weeks. I do not have covid. But I still feel like I should have another test. Again. Perhaps one every day. Just in case. 

My OCD  thoughts and behaviours are out of control. Something I’d once managed has rewired itself in this pandemic, found a new obsession. Gifted me new compulsions. Now, personal safety (my previous OCD focus) and contamination are the same thing. Now, I do not want to leave the haven of the apartment, except for the hospital. Now, I want to disinfect the entire place, again, just in case.

The government keeps reminding us to stay home, soap and sanitise, wear a mask. How do I know where the line is between normal precautions and compulsions? How do I know when I’ve crossed it?

I don’t.

But I am learning to just be as I am, by grace and devotion to let go, to just let it be.