Yesterday, I had a video call with a friend in the USA; the same friend who, in 2020, would zoom me daily for a shake session while I was in Melbourne caring for G through his treatment. These days, we frequently end our calls with tarot or oracle readings.
In 2010, two weeks before leaving my then-husband, I had my cards read. Not a coincidence. I keep the scrap of paper that I wrote out from that reading, with the cards and their layout, in a small crate of keepsakes. Perhaps I will revisit that spread this year, now that my understanding of the cards has deepened.
In 2012, I went to a circus-themed costume party as a fortune-teller and conducted card readings for any party guests brave enough to sit opposite me at the table. I began all my readings in the same way; the cards cannot tell you anything you do not already know. Just as I had already known in 2010. Two weeks later, the couple who hosted the housewarming party broke up. And he moved out. Not because of my reading, however, as it turned out, the reading had exposed and brought to light some inconsistencies within the relationship and he was not prepared to continue.
Despite these outcomes, tarot is not a tool for predicting the future. And it did not do so in either of these cases. Instead, it is a means of finding deeper insight and self-awareness. The cards provide prompts to examine specific areas of our lives, patterns of behaviour, or parts of ourselves we keep in the shadows. Sometimes for good reason. The deck my friend used for my reading was The Wild Unknown Archetypes Deck and I drew two cards; The Bridge and The Mask. The Mask was about flipping the usual script; instead of a mask hiding our true nature, what if particular masks reveal more authentic parts of ourselves? But the main card was The Bridge. In summary, The Bridge relates to connection and it came with a short exercise to “go deeper”.
Lie on the floor, it said, and listen to Bridge Over Troubled Water. So we did. I rolled my teal velvet chair back from the desk and pushed it into the gap between the bookshelf and the filing cabinet. Then, I crouched down beside my desk, squeezed myself into the gap between my bookshelf and the desk, and stretched out on the floor. She hit play and the tinny sound of the song blaring through her iPhone was beamed from her lounge room in California to my office in Victoria through my laptop speakers.
I grew up listening to Simon and Garfunkel. Between the two of them, Dire Straits, and Beethoven, there was rarely anything else on my father’s record player. Or on the tape in the car. So it wasn’t so much that I grew up listening to them by choice as it was I had no say over what played on the radio. I was familiar with Bridge Over Troubled Water. But it has been years since I really listened to the lyrics.
The goals and intentions section under the category of social relationships in my planner is blank. I could speculate at length about what it means but I won’t. Whether it’s the pandemic or age, my tolerance for people, people around me, and especially people near me has diminished over the last few years. Previously the social co-ordinator among my friends, I now just want to stay at home. I want a slower pace of life. I want to move more slowly. I want to take my time. I want ease and flow and peace and stillness. I am going inwards. Growing inwards. Growing more aware of my own desires, my own wants, my own needs. And I am not willing to give them up. This is a deliberate choice I am making. It may be time to set out my goals and intentions for my relationships, my friendships, my everythings. I want to be as intentional about the social connections I build in my life as much as I am about my health, my career, my creativity and my finances.
My eldest stepdaughter turns 25 later this year. In my keepsake crate, I also have a journal from when I was 25. In it, I write that I am having a quarter-life crisis. My first question about that now is, when did I decide I was living until I was 100? My second question is what made me think I was running out of time?
The journal contains a list of things I wanted to achieve. Some of which I have. Many of which I haven’t. And while I’d love to believe that I still have plenty of time, the last few years have shown me that life can change in an instant. It seems, right now, that I may have plenty of time. But life does not offer us these guarantees. I may be–no, am–running out of time. And I have realised, despite this, there is no reason to rush.
Sail on Silver Girl Sail on by Your time has come to shine All your dreams are on their way
Today is decompression day; I’ve worked my normal round (4×12 hour shifts on a night night day day roster) plus an additional day of overtime this last week–for a total of 60 hours from 7pm Tuesday night to 7pm Sunday night. On my first day off after work, I can barely summon the energy to read, much less write. So today’s Music Monday is short and I’ll be back tomorrow.
When the only thing that’s sure is this unsteady ground
Hein Cooper
Listening to certain types of music often gives me the same strange sensation of yearning I have when I look at the stars. As if I belong somewhere else. Or perhaps, rather, am from somewhere else. When I was a child growing up in the church, I believed this was because I belonged in heaven–out there, in the stars somewhere. Now, though, I know it’s because all the elements in my body were forged in the heavens; hydrogen and helium during the big bang, while heavier elements were made by fusion in a star’s core.
My affinity for out there is also a way to dissociate from right here. Right now.
I am trying to remember that, as Rumi says, “You are not a drop in the ocean, you are the entire ocean in a drop.”
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.
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.
It is one in the morning on December 29 and I’m sitting quietly in the corner of an emergency vet hospital one and a half hours from home. It’s the closest emergency and specialist centre to me and I’d rather not be here but H, my cat, has deteriorated over the last few days and I cannot just hope for the best.
A few hours ago, G called out to me from another room. “I love you more,” he said, as I was googling respiratory distress and calling the emergency vet for advice. “Yeah?” I shouted back. “But do you love me enough?”
“What do you mean, enough?” he asked, realising our banter had shifted.
“I’m going to take Hunter to the emergency vet,” I said. “You can stay here.”
I heard the familiar crunch of styrofoam as he hauled himself out of the beanbag in the lounge room before coming to the dining table where I sat staring at the computer.
“No, I can’t,” he said. “You know I can’t.”
So at 10.15pm we piled into the car with the cat whose breathing was shallow and rapid, nostrils flaring.
***
A year ago, I almost succeeded in burning down the house. Not in the Talking Heads way, but rather in the way that I’d spent until near midnight on Christmas Eve cooking and preparing for the following day. After wiping everything down, cleaning the stove top, and placing the wooden chopping board on the stove for the following day’s prep, I stumbled into bed.
A couple of hours later, I woke to a strange, distant beeping sound. Weird, I thought in my sleepy haze, that sounds like a smoke alarm. It took a moment to process as my brain registered the noise; the far-away sound transitioning from a flat battery beep to a genuine, urgent, emergency beep.
Our house had only one smoke detector which, months earlier, had fallen out of the cement sheet ceiling so I’d placed it on top of a bookcase in the family room just down the hall from our bedroom. I moved slowly in the dark, assuming the smoke detector had failed, and felt my way along the bedroom wall to the sliding door before shuffling through a small gap into the hallway.
I opened the door at the end of the hall into the family room and switched on the light. Thick smoke obscured anything more than a few feet in front of me.
The cats, my God, where were the cats?
Edith darted immediately between my legs into the hall that was now beginning to fill with smoke. I ran back to the bedroom, woke G in case we needed to evacuate, and said I had to go find Hunter. I coughed my way through the smoke into the kitchen to attempt to identify where the fire was. But there was no fire. Just thick, heavy smoke in every room. I found H and hurried him into the bedroom where G was up and trying to come out to help. “Go back, go back into the bedroom,” I said. “There is no fire. I have to figure out what is going on.”
I wrapped a wet washcloth around my face to reduce the amount of smoke I was inhaling–we hadn’t yet begun to wear N95 masks so I didn’t have one readily available–and I knew from my workplace fire training that any damp, thick cloth would help filter the smoke. I walked from room to room opening windows, switching on fans and opening doors but could not find the source of the smoke.
Back in the kitchen, standing in front of the stove, I heard the familiar crackle and pop of wood as it heated and burned. Then I looked at the chopping board. I’d used it all day, washed it many times, and it had been waterlogged when I’d left it on top of the clean stove. Now, it was dry and beginning to curl at the edges. I grabbed it with an oven mitt, shoved it into the sink and doused it in water. On the underside was a perfect, charred circle where the hotplate had been slowly scorching it for hours. Eventually, I worked out that as I’d cleaned the stove and wiped the knobs, I must have flicked one ever so slightly into the on position. Just on low. Just enough that it heated the chopping board. The water had kept the board cool enough not to burn but instead, smoke profusely for hours, and now that most of the water had evaporated, it was dry and ready to burst into flames. It took hours to clear the house of smoke and even weeks later, if the air was very still, you could still catch a faint whiff of it.
Over the next 24 hours, Hunter’s breathing became loud and scratchy. The day after Christmas is known as Boxing Day, here. Boxing Day is a Public Holiday in Australia, and I called my vet, expecting an answering machine message that would advise me of their holiday opening hours. Instead, a person answered. And although there was only half an hour until closing time, they could fit H in. Did I want to bring him down? It’s a Public Holiday, though, they said, and an emergency appointment. Was I ok with both the extra charges? Yes, sure, I said. Whatever he needs.
I took H to the vet for raspy breathing and suspected smoke inhalation. One of his eyebrows was singed off and I guessed he had jumped up onto the counter to investigate, inhaling lungfuls of the heavy smoke. He’d always had a slight snore but in the 24 hours after the smoke event, his snore escalated to something else.
When I arrived and they listened to his chest, they wanted to perform an x-ray; a procedure which would require the vet and a nurse to stay back past closing time. Would I be ok with additional charges? Yes, sure, I said. Whatever he needs.
When I first adopted H, I used to smoke–inside–and although I quit many years ago, I have been paranoid ever since that I’ve given him lung cancer, in much the same way that I am sure I gave G blood cancer.
Nine hundred dollars later, we went home. Just monitor him, they said, and see if it settles down.
***
It didn’t settle down, so for the last 12 months, he’s had various treatments and investigations including blood tests, a specialist cardiology appointment and ultrasound of his heart, antibiotics, steroids and other medication. The final consensus has been “asthma” for which he has been prescribed an inhaler but I (not a vet) disagree with the consensus. Yes, he had been coughing. And the inhaler has eliminated the coughing. But there are other things, too. A loss of his higher register voice over a period of years. A new struggle to swallow and a choking/gagging noise when he eats. Vomiting. The high-pitched stridor in his throat as he inhales, that only I can hear when he rests his neck on my ear as we are laying down watching TV. At the vet, he is too stressed, too anxious, and too growly for them to hear what I hear.
Instead, those additional symptoms point to some type of laryngeal paralysis which is getting worse. He is booked in with the internal medicine specialist on January 18 for a scope in his nose and throat to identify any potential blockages. But the last few days of heat at 35 degrees Celsius saw his breathing rate double from 30 breaths per minute to 60 and to become more laboured. His breaths have been shallow or gasping and neither his steroid inhaler nor the emergency Ventolin salbutamol has helped.
G thinks I have hypochondria by proxy with the cat. And while I do have severe health anxiety and some of it may be transferred, I know there is something very wrong with his respiratory system and if he suffocates at home through my lack of action when a vet visit could have saved him, I will never forgive myself. H has outlasted all my relationships to date; at almost 12 years old, he has been with me through several heartbreaks, interstate moves, and has not faltered in his devotion to me from the very first moment I opened the cage door at the pet shop and he climbed into the crook of my neck. G is catching him in the longevity stakes, of course, and will eventually overtake him but I had intended to have H around for at least another five years before he breaks my heart.
***
As I wait, a man brings his elderly German Shepherd in. I catch snippets of his explanation to the nurse who is triaging the late-night attendees. Christmas Day, a whole roast chicken. Vomiting. Restless. Won’t sit down/lie down. Strange because. Osteoarthritis. I know that cooked chicken bones are terrible for dogs’ tummies and begin to worry for this dog that looks like the one I’m minding for 12 months. They take the man and his German Shepherd through to the back. Hunter has been under observation for almost two hours and no-one has come to give me any news. An hour later, the man comes out from the rooms in the back without his German Shepherd. I can hear him at the reception desk. He is sniffling. Crying. He makes a phone call I can’t hear. And I know then, that he won’t be taking his dog home. I begin to panic that I may not be taking Hunter home, either.
There is no sadder place than an emergency vet at two am in the holidays, except, perhaps for a hospital. And I’ve seen my share of those, too.
Another couple of hours pass, and they call me into the room. They ask why I brought H in tonight, and I explain the history of his breathing and investigative testing over the last 12 months, his current treatment, and the deterioration over the past three days.
“I can’t find anything wrong with him now,” the vet says. “His respiratory rate is normal, he is not in any distress–except perhaps some anxiety at being here–and all his other vital signs are good.”
This should be good news. Instead, I am only convinced that everyone except me is missing something while also knowing this is only going to further G’s belief that I’m making up symptoms the cat does not have.
We drive home, or rather, G drives us home and we fall into bed as the clock ticks over to five am.
***
At 8.30 am my alarm goes off. I have a doctor’s appointment at 9.40 am. I’ve had three and a half hours’ sleep and am starting to feel the effects of the covid booster that I had the afternoon before. I cannot tell if my headache is from the vaccine or lack of sleep. If the buzzing in my body is the vaccine or lack of sleep. If the nausea is the vaccine or lack of sleep. But I am starting to feel like death.
I go to the doctor and forget why I made the appointment so I end up discussing the headaches which are coming more frequently now than ever before. They could be hormonal, I say. Or they could be stress related. I list all of the reasons I could be experiencing frequent headaches but I never mention brain cancer. And neither does she. Where are the headaches located? she asks, and I motion across my forehead. At the front? she confirms. Yes. And do they get worse if you tip your head forward? Yes, I say. I can then get a shooting pain behind my eyes that takes a minute or two to recede when I lift my head again.
“Aspirin,” she says. “I’m going to give you a specific dose of aspirin to take every day for a week. I think they are tension headaches. Come back next week.”
I ask her to reprint my referral to the gastroenterologist that I’ve misplaced so that I can have my low iron levels investigated. And I check that I do not need a referral for a mammogram, that I can just book in through the breast screening program. Then, I go home to bed.
By lunchtime, I cannot sleep any more but feel awful. G feels wretched, too. And we are not sure if it’s from staying up all night or the vaccine. Or both. He says he feels hot, but when we take his temperature, it is normal. Several hours later, when I start to feel chilled, though I wouldn’t say feverish, I take my own temperature: 37.8 degrees Celsius, a mild fever. I take two Tylenol, have a warm shower, and go to bed.
***
Christmas has been a difficult time for me for 27 years and I ponder whether it is my own anxiety that ensures I add more traumatic events to the list each Christmas. Is it my attitude to this time of year that makes it more challenging, or is it the subconscious memory of terrible events that determine my attitude? For years, I worked on Christmas to avoid it altogether. Two nights ago, I took H to the emergency vet, believing he may be close to death. Today, he has been chasing the other cat around the house the same as he always does. Did I imagine it? Was his breathing really problematic or was it simply my fear that made it appear so? Will I believe anyone telling me there is nothing wrong with him or will I always think they are wrong? Are H’s perceived breathing problems a metaphor for my life? Perhaps, I am choking. And all we can do is keep breathing.
This world of words and pictures and music is a strange one. Everything I say here is true. Has always been true. And yet, it can never be the whole truth. I cannot write every thought I have, describe every interaction, post every photo or memory. That is to say, it is not a complete picture of my life. Only what I choose to share. But does that mean that what I don’t share can never be known? I’m not so sure. Quantum entanglement, while only in the initial stages of scientific exploration and understanding, possibly, probably shares more information and secrets than we will ever know.
Today, I feel better. There is no headache (a miracle) although I’ve not yet taken any aspirin. And there is no strange buzzing in my body. No nausea and no fever. I am lying on the couch as I type this, the clock ticking over to one am on December 31. The laptop is propped on a pillow on my thighs, H is lying on his side on my stomach, his breathing noisy but not distressed. His body rises and falls with my breath; he stretches, pushes his paws against my face, turns over and relaxes again.
NGC 6164: Dragon’s Egg Nebula and Halo Image Credit & Copyright: Russell Croman
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.
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.
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.
On Wednesday, it will be the twelve-month anniversary of when I took G to the hospital for strange, stroke-like symptoms that turned out to be brain cancer. The next two months will be filled with dates like these; that time he had brain surgery, the time he came home from chemo but developed a severe septic infection and had to be placed in a coma and his organs started to fail, that time after he woke up from the coma but couldn’t walk or talk or move…
I am not sure how I will process the next few months. I didn’t process any of these events or emotions last year; instead, I woke up every day and simply did the things that needed to be done without thinking about anything else.
Eleven months ago, I took myself to the emergency department for heart issues and chest pain while G was in hospital. The triage nurse took my blood pressure, looked at me and said, “Oh, sorry, it hasn’t worked–let me take it again.”
I asked what it was and she said “It’s 158/123”, which put me in the hypertensive crisis category.
“No, that’s right,” I said, “based on what I’m feeling.”
My ECG was normal, even if my heart rate was elevated. They diagnosed me with stress and suggested a follow up a few months later. That ECG in January was normal, too. But now, even though the stress has dissipated, my heart is still palpitating and thudding a couple of times a day. I still have chest pain, multiple times a day. So I’m typing this with a holter monitor hooked up to my heart. I’ve pressed the button several times for mild pain but I haven’t had a bad episode yet. And I don’t think 24 hours is long enough to register one. A month ago, I’d have had three-four episodes by now. A few weeks ago, the palpitations were so intense I had to pull the car over on the side of the road and wait until they had passed. But now, they’re only happening every few days so I’m sure we won’t record the problem–tests are often ridiculous that way. Unless there is more happening that I don’t actually feel?
So, as we approach what I’m calling “anniversary season”, I am going to focus on sorting out my own health and being grateful that G is still here–currently cancer-free, progressing in rehab, and making just as many terrible jokes as ever. Maybe we’ll get our 40 years together, after all.
If you haven’t seen Nightbirde’s golden buzzer performance of this song on America’s Got Talent, are you even on social media??
A couple of weeks ago (yes, it’s taken me this long to make time to post) I overheard G listening to something on his phone in another room. I wasn’t able to make out the words, just a soft melodic voice floating into the kitchen from the lounge room, and as I walked in to where he was sitting to find out who it was, all I could hear was “it’s ok, it’s ok, it’s ok, it’s ok if you’re lost, we’re all a little lost and it’s alright…”
Later that night, I googled it for myself and sat in bed listening to the voice of someone still battling cancer telling me that it was alright.
When G was first diagnosed with a rare and aggressive lymphoma last year, I spent hours telling other people that bad things happen to good people and that there is no rhyme or reason as to why some people develop cancer; one in two men will develop some type of cancer in their lifetime, as will one in three women. All the while, I was running through a list in my head of all the possible ways I was responsible for his cancer–everything from physical (I must have weakened his immune system by giving him HIV even though I don’t have HIV), to spiritual (God is punishing me for not believing in God anymore), to psychological (if I don’t perform certain rituals and compulsions then bad things happen to people I care about).
Being responsible for it meant that it was possible that I could resolve it, fix it–maybe–or at the very least, I was to blame–and that life wasn’t as uncertain as it felt when the outcome of this disease was entirely out of my hands. It’s not that I’m a doctor. I just feel like I should be able to fix everything for those I love. Because although G was the one with cancer, he wasn’t the only one impacted.
In Nightbirde’s AGT introduction, when she explains she still has cancer in her lungs, liver and spine, one of the judges says “oh, so you’re not ok?” and she replies “not in every way, no.” And then she says the thing I’ve spent the last year trying to teach and learn at the same time…
“It’s important that everyone knows I’m so much more than the bad things that happen to me.”
Snippets & Glimpses 
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