death

The Reader

/ Tash / Leave a comment

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

White Light

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Standing at the side of the hospital bed, eyes closed, having rubbed my hands together the way we’d often done in yin yoga, I moved my palms towards and then away from each other, allowing the pressure and heat from the friction to grow into a sticky thread between them. In my mind’s eye, I imagined shaping this thread, forming a growing, glowing ball of white light between my palms. As G lay in the ICU, machines beeping and blinking all around him, I created ball after ball of white light and stuffed them into his comatose body. Later, I worried that I hadn’t been able to ask if he minded if I shoved basketball-sized shimmering lights into his organs. What is the requirement for consent to perform magic when someone is dying?

In reality, I don’t believe what I did healed him. That was done by a team of brilliant doctors. But it made me feel better to do it, and isn’t that what matters? I wasn’t hurting anyone. I suppose that is the purpose religion or prayer can serve, too. To make people feel better? I am not religious. Not in any recognised way. I do not subscribe to any of the world religions and while I grew up Christian, neither I, nor the Christians I still know would ever call me that now; the Bible is not the inerrant word of God. There may or may not have been a real, live Jesus. There is no such thing as sin, heaven, or hell; these are all constructs of control. But once, I used to be a fundamentalist. And the problem I now see with fundamentalism is that it does hurt people.

When he came out of the coma, he was awake and alive but not here. Not himself. He was on a train. He was in an ambulance. He was a 60-year-old school teacher from a neighbouring town. He needed a cigarette. God, he needed a cigarette. Hold on, he said, hold on, hold on, hold on as he tried to grab my arm with the only one of his that sort-of worked, his movements slow, stiff and erratic.

“How long has he been teaching?” a nurse asked me.

“He doesn’t,” I said. “He’s never been a teacher. He doesn’t smoke.”

Sentences were coming out of his mouth but they were just a word in front of a word in front of a word. Unrelated. Until he said “I need to learn another language!”

“You learned another language,” I said. “Remember when we went to Paris and I taught you French? Let’s practice!”

“Un,” I said, expecting him to repeat it.

“One,” he replied.

“Deux,” I said, trying to encourage him to repeat the French.

“Two,” he said.

“Trois.”

“Three.”

“Quatre.”

“Four.”

I counted to ten in French as he repeated the English number after me.

“That’s English,” I said, “not French.” And started counting again.

“Un.”

“One.”

Half way through the second count, I realised he understood. While his sentences made no sense, he knew exactly what was going on.

“Can you understand me?” I asked.

“Yes,” he said.

“Do you know I’m having trouble understanding you?”

“Yes.”

The speech pathologist who’d seen him earlier in the day popped her head into his room and asked if she could see me for a minute.

“I’ll be back,” I told him. “Just a few minutes.”

She asked if he’d ever had any issues like this before the coma; struggles to communicate, not making sense, difficulty with speech or memory. No, I said, never. And then I asked the question I didn’t want an answer to. Is this…going to be permanent?

“I don’t know,” she said.

I shook my head. “I don’t know what he’s talking about. He’s not 60, he’s never smoked, he’s not a teacher. None of what he’s saying is true. They’re sentences. But they make no sense.”

She nodded and bit her lip. “Ok,” she said, “thanks. Could you make something for him? When people start to have communication and memory issues like this, we ask their family to make a memory book. Put in info like work, family, life, etc. Sometimes, it helps their memory.”

I left the hospital after dinner and returned to the Leukaemia Foundation where I stayed up until 2am making “The Book of G” from the template the speech pathologist had emailed me. I filled it with info and pictures for the staff to read, and read to him, emailed it to the nurse-in-charge of his ward who printed it and stapled it together. “You can come in today from 9am,” she told me, when I called to check in that morning after shift handover. Covid restrictions were still in effect and hospitals only allowed visitors in very specific circumstances. A patient not being able to communicate was one of those circumstances.

When I arrived at his bedside at 9.05am after presenting at security for screening, temperature checks and confirmation I was allowed to visit, he was no longer a 60-year-old school teacher. He was himself, as if the person he had been yesterday never existed.

For the last four years, I’ve used a beautiful planner made by Magic of I. At the start of it, there is a yearly planning and intention-setting segment covering categories such as inspiration and creativity, work, health, relationships, spiritual, mental, social and wealth. Last week, when goal-setting for this year, I wrote: practise my French on Duolingo for a minimum of 10 minutes per day.

This afternoon after logging into the app for the first time in many years, I noticed a change. Ads. Ugh. And every time I completed a lesson, it launched into an ad to upgrade. I messaged a friend who is a Duolingo aficionado. He has a 1051 day streak. I’m only aiming for 30. My friend is in Brazil at the moment, practicing his Portuguese and Jiu Jitsu. I’m not sure he needs Duolingo when he’s in the thick of it. And yet, every day, he completes his lessons. I asked if the upgrade was worth it, because it said 60% off. But it didn’t say off what. After 15 minutes of the free version, though, the ads became obnoxious. That’s how they get you. So now I’m a super Duolingo user. I’m hoping the cost will compel my commitment. As I perused this new version of the app, I was astonished to discover you can now learn languages such as High Valyrian.

“Didn’t realise we could learn fake languages!” I texted.

“Why do you call it “fake”?” he replied.

“Because it’s not from a real country.”

“Not all languages are from countries…”

“Perhaps I should have said fictional language. That would have been better.”

It prompted a conversation of language. Languages. Fictional, engineered, and invented languages. Semantics. I asked if he had heard of the Pirahã tribe from Brazil, who have no words for colours, numbers, or past or future tense. Some linguists argue that it is the only language that does not subscribe to the theory of Universal Grammar as there is no recursion. Others argue it does contain recursion, albeit, tangentially. The Pirahã have also been described as the happiest people on earth because, without tense, there is no past or future. They live fully in the present. I scrolled through the Duolingo menu for the possible languages you can learn, and while you can learn Esperanto, you cannot learn Pirahã.

It is possible, perhaps likely, that I have PTSD from this time; from the time spent caring for G both while he was in active treatment, and then while he was in rehab and recovery for months afterwards. Because while my patient was (remarkably) ever-patient and compliant, and caring for him was comparatively easy, the anxiety I developed due to the uncertainty of the situation has not dissipated. At any shift of energy or fatigue, any new would-be symptom, my nervous system moves into uncomfortable overdrive. While he cruises along with a “whatever happens, happens” attitude, I remain hypervigilant to any changes in condition, absolutely not living fully in the present; trapped somewhere in the ether between the trauma of the past and anxiety for the future.

The last six months have seen me dedicate my time to pushing all the medical terminology and understanding of PCNSL out of my brain and replacing it with work again. Just before Christmas, I sat my simulator assessment for work and passed. I am now a fully qualified Unit Controller, in charge of a generating unit. When I began my traineeship, within our group was a former ICU nurse, which on the surface, seems like quite the shift. But as I explained to my mother the other week when I passed my test, it is different, but also the same.

Whenever a patient is intubated and ventilated in Australia, they are assigned a private nurse who is with them for 12 hours at a time. G was ventilated and on dialysis for almost two weeks and his nurses monitored the pumps and valves and machines and equipment, as well as all his bodily systems; blood test results, blood pressure, heart rate, and more, to determine what the next course of action would be, what steps may need to be taken. Any fluctuation of conditions requires an immediate response or their patient could die.

My new role involves me monitoring pumps, valves, equipment and systems of both a mechanical and electrical nature to ensure the unit operates efficiently and within set parameters and limits. It’s same same but different.

I think of the electricity I generate as magic. White light. Invisible to the eye and critical to almost everything we love to do on this tiny blue and green ball, spinning around a dying star. I cannot say what happens when we die. I don’t believe we go to Jesus but I don’t know where we go. I used to think we went nowhere but after the last couple of years, I’m not so sure. Cosmic connections or events appear to exist whether we are aware of them or not, whether we respond to them or not, whether we believe in them or not; we do not understand enough about the butterfly effect, quantum entanglement, or the physics of subatomic particles. And until we do, sometimes, it’s just easier to call the things that happen magic.

Brain Jumps

/ Tash / 1 Comment

I am in bed with my poetry and my books. And my cats.

***

Tonight as I was stacking the dishwasher, I had a strange sensation before an image from the film Nell shot back to me; of a wide-eyed woman, alone in a cabin in the woods.

How nice to live alone in a cabin in the woods.

But a woman, alone in a cabin in the woods, must be a witch.

How nice to be a witch in a cabin in the woods.

***

At the beginning of my senior year of high school, when I was 16, my parents separated. My mother never re-partnered. And, to this day, I don’t believe she ever even dated. My father. My father, on the other hand. I don’t speak of my father. Or to him.

But my mother.

When my parents separated, my mother was four years younger than I am now. She had two teenage children; me, and my brother, three years younger than me.

In my memory, I assume she was too busy to date. But that can’t be true. Because she danced. Many times a week. In a line, with others. She took up this type of dancing because it did not require a partner. Perhaps, neither did she.

In my memory, I assume she never stopped loving my father. Even though she left him. But I know my father; so this can’t be entirely true, either.

In my reality, what is perhaps most true, is that I didn’t think any of these things about my mother. I didn’t think about her or her happiness at all.

When G and I moved back home from the Leukaemia Foundation apartments last year, we had G’s elder daughter over for an outdoor dinner. At one point, the conversation became morbid and I shared the fact that if G dies before me, I do not intend to re-partner. His daughter, still blissful in the first year of new love, was shocked. But won’t you be lonely? she asked with genuine concern.

It’s possible.

But I wouldn’t have to take care of anyone except myself. And my schedule and time would be entirely mine.

Perhaps that is why my mother didn’t re-partner. And if that’s the case, I may have more in common with her than I thought.

Once Upon A Time

/ 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.

This is almost the version that Rosemerry reads here…

And, to whomever is reading now: Hello, and welcome.

Deterioration

/ Tash / 3 Comments

I wrap myself into my quilt like a burrito. I’m sleeping on the couch which, while not overly comfortable, doesn’t induce the same anxiety as having an argument with myself about going to bed. Instead, when I become sleepy, I close Instagram, blow out the candles, turn off the salt lamp and roll over.

I am not sure why going to bed holds such angst for me but it always has. At least, until I met G. For the first time in my life, I looked forward to going to bed because I felt safe. Held. Loved. I try to replicate this feeling now while he’s not with me but the best I can do is to stay awake until it is impossible not to sleep.

In the last week, there has been another infection, two surgeries and blood counts that still aren’t following the predicted path. My OCD has fixated itself on his illness and now intrusive thoughts of blame drive all manner of compulsions, day and night. If I haven’t given him covid, I must have given him cancer.

Life is random and unfair, I tell others. Bad things happen to good people for no reason. And while I almost believe that is true,  intrusive thoughts still swirl that this is somehow my fault. My punishment. For what exactly, I haven’t determined. It could be a range of things and my brain is providing plenty of options. As a result, my anxiety is out of control. Today I had a telehealth appointment with my GP who has recommended blood tests, an ECG to check my heart which has lingering issues from my years of being underweight due to anorexia, and some medication.

“This is the only prescription I will give you for this medication,” he tells me, “due to it having addictive properties. You must be sparing in your use but it will help with the panic attacks and anxiety. I will give you a second prescription for something that you can use long term but the effect won’t be noticeable for two to four weeks.”

It’s been seven years since I took medication for my mental health and while I suspect I need it, a new fear has surfaced during the pandemic and my husband’s illness which will likely prevent me from doing so; I cannot take any medication for fear of the masking of covid symptoms or because I may have a bad reaction requiring treatment. I will no longer even take paracetamol or ibuprofen, pain killers I have taken for years, especially when I have severe cramps during my period but now I am afraid they will mask the symptom of a fever and I will never know if I accidentally acquire covid. I will not take new tablets, not even vitamins, in case they cause some sort of reaction where I have to present to a hospital because the more places I go, the more likely I am to come into contact with someone with covid. My anxiety is pushing me towards never leaving my house again, unless it’s to travel to the hospital where my husband is having treatment. Home. Hospital. Home. Hospital. That is the extent of my world right now.

And all of it seems justified.

Fate

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Fate, Federal Court, Moon
by Anne Carson

The fate of the earth. The fate of me. The fate of you. The fate of Faisal. The fate of the court where Faisal will plead his case. The fate of the court’s bias. Every court has a bias. It sifts to the surface gradually. The fate of whomever we drink to after court. The fate of that branch of mathematics that deals with ‘dead-end depth’. The fate of Yemen where Faisal will probably never return. The fate of the engineering job Faisal had in Yemen before the events in question. The fate of the ‘simple random walk’ and its difference from the ‘homesick random walk’, concepts from a mathematics textbook I read once about dead-end depth. The fate of Montreal where Faisal lives now. The fate of his family, the ones still alive, back in Yemen and the fate of the bridal couple, still alive, whose wedding was the target of the drone pilot (a mistake). The fate of the others, not still alive (a mistake). The fate of the moon that rose over us as we drove through the mountains of Pennsylvania to be present at Faisal’s day in court. The fate of the silveriness of the moon that no words can ever describe. The fate of the bright sleepless night. The fate of our phones, which we decide to take to the courthouse at 9 a.m. and relinquish at the door. The fate of two guys doing a job interview in the cafeteria where we stop for coffee on the way to courtroom 31. Been around the block, says one guy. Army does the billing, says the other guy. The fate of so many men in suits and ties. The fate of being lost in marble corridors. The fate of being much too early at courtroom 31. The fate of the knot of lawyers who surround Faisal as he enters in a new suit. The fate of congratulating him on his new suit. The fate of his smile. His smile is great. The fate of the numerous clerks who pour glasses of water for the judges and generally fuss around. The fate of the appellant whose case precedes Faisal’s, which concerns a warrant ‘so lacking in probable cause’ that [something to do with ‘Garcia’] [something to do with gangs and ‘a constitutional path’]. The fate of the pearls worn by Judge Dillard, who sits on the far right of the bench, which curve like teeth below her actual teeth. The fate of straining to hear what Faisal’s lawyer, with his back to us, says to the judges. The fate of him perhaps saying that the government is asking the court to refrain from judging, asking the court to step back without knowing what it is stepping back from. The fate of proportionality, a matter of context. The fate of what is or is not a political question. The fate of the precedent called ‘al Shifa’, with which everyone seems familiar. The fate of a publicly acknowledged programme of targeting people who might be a danger to us. The fate of inscrutable acronyms. The fate of me totally losing the thread of the argument as we distinguish ‘merits’ from ‘standing’. The fate of what Faisal is seeking, which is now given as ‘declaratory relief’ (new phrase to me). The fate of ‘plaintiffs who have no chance of being harmed in the future due to being deceased’, a wording that gives pause. The fate of how all this may depend on her pearls, her teeth. The fate of the sentence, ‘We are really sorry, we made a mistake,’ which Judge Dillard utters in a hypothetical context but still it’s good to hear. The fate of the government lawyer who is blonde and talks too fast, using ‘jurisdictional’ many times and adding ‘as the relief sought is unavailable’. The fate of wondering why it is unavailable to say, ‘Sorry’. The fate of Judge Dillard’s invitation to the government lawyer to tell the plaintiff how he might ‘exhaust all administrative avenues of redress’, as the government claims he should have done before bringing this case. ‘Where would he go?’ Judge Dillard asks with apparent honest curiosity. ‘If you were he, where would you go?’ The fate of our bewildered conversation afterwards about why she said this, whose side she is on, what she expects Faisal’s lawyers to do with it now. The fate of the tuna sandwiches eaten with Faisal while debating this. The fate of his quietness while others talk. The fate of his smile, which seems to invite the soul, centuries ago. Serving tea, let’s say, to guests. The moon above them. Joy. The fate of disinterestedness, of joy, of what would Kant say, of not understanding what kind of thing the law is anyway, for example in its similarity to mathematics, for they both pretend to perfect objectivity but objectivity is a matter of wording and words can be, well, a mistake. The fate of the many thoughts that go on in Faisal when he is quiet, or the few thoughts, how would I know? The fate of the deep sea diver that he resembles, isolated, adrift. The fate of him back in his kitchen in Montreal next week or next year, sitting on a chair or standing at the window, the moon by then perhaps a thin cry, perhaps gone. The fate of simplicity, of randomness, of homesickness, of dead ends, of souls. Who can say how silvery it was? Where would he go? Sorry?

Published in the London Review of Books
Vol. 39 No. 6 · 16 March 2017

I was once given this poem as the introduction to a writing exercise. Write or re-write a paragraph of your work-in-progress beginning every sentence with the fate, our tutor said. Notice how commencing with these words changes the way you shape your story. Notice what impact fate has on your narrative.

I do not like fate. I refuse fate. I want to scream at fate to fuck off.

I do not want to think about the fate of the earth, the fate of me. I especially do not want to think about the fate of you.

I do not like fate having an impact on my narrative.

And yet. Here we are.

The fate of me. The fate of you. The fate of the hospital where you are having your chemo. The fate of the doctors. The fate of the nurses. The fate of the specialists who are administering your treatment. The fate of the apartment in our COVID capital. The fate of the foundation that’s provided our accommodation. The fate of my psychologist who keeps asking “are you eating?” but how could I be eating? The fate of the words intensive protocol, neurotoxicity, and treatment related complications. The fate of having to learn another medical language in the middle of a pandemic after already learning the language of the pandemic. The fate of how all of this depends on limited evidence.

And so, I say.

Fuck fate. Fate will not shape my story. Or yours.

Musicless

/ Tash / 2 Comments

Many Mondays have passed without music. As have all the Tuesdays, Wednesdays, Thursdays, Fridays, Saturdays and Sundays. There is little solace and much grief. I’m trapped inside a free-falling elevator plummeting to the bottom of the shaft and I don’t know when it is going to stop.

The heat of the day has been swept away by the storm. Light rain is spattering on the roof. And I am going to bed, again, to not sleep.

 

 

Industrial Accident

/ Tash / 3 Comments

A brown velvet nose presses into the crook of my elbow
Paws rest against my aching arm
Locked into position by his warm body
I shift, try to roll, uncomfortably
Today there is no comfort
Seven years old, my cat snores, not purrs
A soft gurgle, followed by
Chirpy, high-pitched wheezing
I worry I have given him lung cancer
From when I used to smoke
I worry he is in pain
And I don’t know
I worry he will get hit by a car
If he escapes outside
I worry how I will cope
When he dies
But I’ve never worried about him
Outliving me
Until today.