White Light

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.

Deterioration

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.

Music Monday | Here Comes The River – Patrick Watson

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

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

Shake It Off and Re-calibrate Your Nervous System

In recent years, I’ve made many changes to the way I manage my mental health. Early intervention when required, the right tools and resources, and daily management have made a world of difference. But over the last few weeks, my husband’s diagnosis and hospitalisation, has tested all of my new strategies. My nervous system is non-compliant with the new tools under this much stress and my anxiety has landed me in the emergency room. As a result, I’ve been trying additional, more unusual things in an attempt to help me manage it. I can’t say they’ve all been successful and I can’t say I haven’t resorted to some of the old, comfortable coping mechanisms. But one thing that I’ve found that does help is shaking. On purpose. For fun.

I once asked my psychologist why I shivered when I had to have uncomfortable conversations and her response was “stress”. When adrenaline and cortisol are released into your body in huge amounts during a threat, they create neurogenic tremors in addition to speeding up your heart rate, blood pressure and breathing.

Shaking is the body’s natural way to release tension and stress and return to equilibrium. Animals instinctively shake to relieve stress after a life-threatening event. This helps them to discharge the energy of the traumatic event. But when humans are conditioned out of this response we lose the ability to re-calibrate our nervous system. We are supposed to cope. We are supposed to be fine. Unfazed.

Unfortunately, if we can’t shake it off, trauma can get trapped in the body. This impacts our ability to respond to future stressors and can lead to a complicated ripple of life-altering impacts. The brain and nervous system can become stuck. They are rewired in a way that can make healing a challenge as they remain on high alert for threats, continually flooding the body with stress hormones.

So in an attempt to reset my nervous system, I am shaking. On purpose. For fun. It doesn’t work all the time but if I shake for several minutes a day, it definitely helps. A friend calls me on Zoom in the morning, and together we do a shake session. She picks the music, I just show up.

If you want any more information on the science behind shaking, this link has plenty!

And if you need a song, here’s the first one she chose. Obviously.

Music Monday | Stars – Ayla Nereo

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.

Tribute

Warning: this post contains gratuitous Mary Oliver references and poems.

Wild Geese

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting
over and over announcing your place
in the family of things.

Mary Oliver

Earlier this week, I posted two pictures on Instagram as part of the #10yearchallenge that is making its way around the interwebs. In the caption, I mentioned that I haven’t posted a selfie in a while because all I see are the same tired, empty eyes and the same strained smile as 10 years ago.

I had forgotten what it felt like to be this depressed. How nothing feels like anything and everything feels like nothing.

The difference, I said, between the two women was that one of them — thirty-year-old me — didn’t know she’d survive the depression she was in. And she didn’t want to. Forty-year-old me, on the other hand, knows that she can survive anything, and she will.

But I left something out. Something critical. There is also another major difference. Forty-year-old me has support that thirty-year-old me never had.

In late May 2014, I met G at a work conference. I flew out for the USA at the end of that week and, for the six weeks I was away, we somehow managed to find up to five hours a day to Skype. At one stage, while we were chatting, I was in a library, looking for a book of poetry.

“Poetry?” he repeated, as if I’d spoken another language (and perhaps I had).

“Yes,” I said. “Mary Oliver.”

I found what I was looking for and sent him a picture of the page. It was The Uses of Sorrow.

The Uses of Sorrow
(In my sleep I dreamed this poem)

Someone I loved once gave me
a box full of darkness.

It took me years to understand
that this, too, was a gift.

Mary Oliver

When I arrived back from my holiday, instead of going home to Sydney, I jumped on a flight to Melbourne. We needed to know if this thing we had developed and nurtured was Real. True. Lasting.

Picking me up at the airport, he gave me two gifts; a set of pens from my favourite stationery store, and a copy of Thirst by Mary Oliver, containing the poem I’d been searching for.

I Did Think, Let’s Go About This Slowly

I did think, let’s go about this slowly.
This is important. This should take
some really deep thought. We should take
small thoughtful steps.

But, bless us, we didn’t.

Mary Oliver

Mary Oliver died this week. She was 83. I cannot remember how I first came across her; which poem it was that struck me, in all the ways her poems have struck me since. But I have a number of her books, and read them when I need reminding how to be human.

Poets, I find, know this intrinsically. And I am still learning – how to be a poet, and how to be a human. Because being human; being gentle, kind, loving, compassionate, and patient in this world is hard. Knowing death comes for us all is hard. Feeling dark things is hard.

When Death Comes

When death comes like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse to buy me,
and snaps the purse shut;
when death comes like the measle-pox
when death comes like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth,
tending, as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth.
When it’s over, I want to say all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.
When it’s over, I don’t want to wonder
if I have made of my life something particular, and real.
I don’t want to find myself sighing and frightened,
or full of argument.
I don’t want to end up simply having visited this world.

Mary Oliver

Although Mary Oliver won the Pulitzer Prize for poetry in 1984, the National Book Award in 1995, wrote 15 books of poetry and essays and was described by the New York times as America’s best-selling poet, she was still largely criticised as being too simplistic, too accessible with her plain verse and lack of typographical gimmicks.

As if that’s a thing.

Where most people find poetry confusing and convoluted, never fully grasping what the poet is trying to say, Mary Oliver used the natural world, interior revelations and small, daily observances to reach the reader. In a radio interview, she said that “poetry wishes for a community”. She wanted her words to find us.

Tonight, G found me struggling with anxiety. It was a state I’d hoped he’d never see me in. Not there. Not like that. And while it must have been a shock for him, his compassion and gentleness in the face of it made all the difference. He doesn’t yet know how much he helped.

There are things other people can do for me right now, and there are things only I can do for myself.

The Journey

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice–
though the whole house
began to tremble
and you felt the old tug
at your ankles.
“Mend my life!”
each voice cried.
But you didn’t stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do–
determined to save
the only life you could save.

Mary Oliver

It is fair to say that Mary Oliver, much like Leonard Cohen, has shown me how to live. Her words speak to you directly, straightforwardly, kindly and earnestly.

In sixty-nine days, G and I will stand in front of our friends, say some lovely words to each other and commit to continue to nurture this incredible relationship. We both know what it is to be betrayed and it makes us all the more grateful for second chances, love, and joy.

Don’t Hesitate

If you suddenly and unexpectedly feel joy, don’t hesitate. Give in to it. There are plenty of lives and whole towns destroyed or about to be. We are not wise, and not very often kind. And much can never be redeemed. Still life has some possibility left. Perhaps this is its way of fighting back, that sometimes something happened better than all the riches or power in the world. It could be anything, but very likely you notice it in the instant when love begins. Anyway, that’s often the case. Anyway, whatever it is, don’t be afraid of its plenty. Joy is not made to be a crumb.

Mary Oliver

tell me, what is it you plan to dowith your(1)