mental illness

Music Monday | Suspirium – Thom Yorke

/ Tash / Leave a comment

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.

Music Monday | Here Comes The River – Patrick Watson

/ Tash / Leave a comment

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 | Stars – Ayla Nereo

/ Tash / 2 Comments

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.

Giraffes and The Mystery of Happiness

/ Tash / 1 Comment

Many years ago, I took my then-boyfriend to the zoo for his birthday. It wasn’t just the zoo though. It was Roar and Snore, an overnight behind-the-scenes zoo experience. The Sydney skyline twinkled on the other side of the bay. Our evening began with crocodiles and crudites, as we shared a few drinks with the rest of the group who’d also committed their night to glamping in the middle of winter, while zookeepers paraded a series of small reptiles around us.

There was a night safari tour of the nocturnal animals including the big cats but my favourite part of the weekend was the private giraffe feeding, early the next morning before the zoo opened. I lined up, took the carrot the zookeeper gave me, and waited my turn.

I was so excited it was all I could do not to squeal. I have loved giraffes for as long as I can remember; when I was seven, I wrote a story about having a pet giraffe named Joe. As I approached the stall, the giraffe stretched his neck down to where I stood and wound his long purple tongue around the carrot I was holding.

Wait, what? Purple?!

Well, blue-ish purple.

I was 32 when I learned that giraffes have purple tongues (and no-one really knows why), a fact which still brings me exquisite joy today.

And so when a friend shared this poem with me a few years ago, it went immediately into my list of favourites. Bryony Littlefair uses the imagery of a giraffe beautifully and beguilingly as a euphemism for happiness but I also know that true happiness is feeding a giraffe.

GIRAFFE
by Bryony Littlefair

When you feel better from this — and you will — it will be quiet and unremarkable, like walking into the next room. It might sting a little, like warmth leaking into cold-numbed hands. When you feel better, it will be the slow clearing of static from the radio. It will be a film set when the director yells cut! When you feel better, you will take: a plastic spoon for your coffee foam, free chocolates from the gleaming oak reception desk, the bus on sunny days, your own sweet time. When you feel better, it will be like walking barefoot on cool, smooth planks of wood, still damp from last night’s rain. It will be the holy silence when the tap stops dripping. The moment a map finally starts to make sense. When you feel better, you will still suffer, but your sadness will be graspable, roadworthy, have handlebars. When you feel better, you will not always be happy, but when happiness does come, it will be long-legged, sun-dappled: a giraffe.

Published by Popshot and in Bryony Littlefair’s winning entry in the Mslexia Poetry Pamphlet Competition, also titled Giraffe

Music Monday | Here With Me – Dido + a Bonus Track

/ Tash / Leave a comment

It’s late. Monday is almost over and I’m trying to squeeze this in before midnight. I’d planned to do it earlier in the day but I’ve been sick, procrastinating, hoping I’d improve instead of getting worse.

In the early 1990s when Beverly Hills 90210 was released, my parents deemed it “inappropriate” television for me. There was sex *gasp*, drugs *the horror*, and domestic violence. While all my high school friends were following the lives of Brenda, Brandon, Dylan, Kelly, Donna, David, Steve and Andrea, I could only watch it in secret at friends’ houses, or listen to the stories around the school lunch table and try to piece together the episodes.

It may have seemed like “just a tv show” to my parents but not being allowed to watch it excluded me from fundamental group bonding between the ages of 12-17. I missed out on popular tv culture that not only provided entertainment, but that also dealt with some serious adolescent issues. Date rape. Eating disorders. Racism. Teenage pregnancy. Suicide. They may have been trying to protect me from the world but the world insisted on making itself known to me through direct experience, even if I hadn’t seen the preview.

Later, when I was living on my own in my late teens/early 20s, a new teenage drama began. I started watching it the first night it aired, not because of the show itself — it was on by accident — but because of the opening theme. The show, Roswell, didn’t last long, a few seasons only; sci-fi teen drama isn’t really a popular genre. But the opening credits rolled with a style of music I’d not heard before. An eerie swooning song, it captured my attention from the first bars. When Dido sang the opening lines, “I didn’t hear you leave, I wonder how am I still here, I don’t want to move a thing, it might change my memory,” I was swallowed whole, into their world.

Roswell wasn’t renewed for a fourth season but my attention was drawn by another show that was starting — The OC. I was married now but Ryan, Seth, Marissa and Summer were living the type of teenage experiences I’d missed out on. Except for the sexual assault. To this day, I don’t know many women who’ve avoided it completely. I inhaled all these shows; the characters with their complicated angst and their ability to act out their emotions so assuredly. The theme song for The OC had an entirely different impact on me; I longed for the seemingly simple, nostalgic American teenage years.

It took me years to realise I was always trying to be somebody else; to escape my own life for something else, somewhere else.

And it’s taken many more to build a life I no longer want to escape from.

Nostalgia

/ Tash / 2 Comments

And in the distance
As barren hills are touched by black-tipped fingers
The fading light reminisces about the days it lingered
Over pots of tea with toast
Whispering sweet nothings to its only ghost.
Then the moon rolls across the inky sky
With a gut full of ache and his upside down smile
And he stops to rest in the furthest corner
Heaves in gasps as the solitary mourner
Closes his eyes just for a minute and
Imagines the days when he was thinner.

January 2013