My husband is currently home between chemotherapy cycles. He has not yet completed a full break, with complications and infections always forcing him back to hospital early. But this time feels different. This time, I’m sure he’ll be here until Friday.
Melbourne went into a hard lockdown. Restrictions included a curfew between 8pm and 5am, a requirement to stay within a 5km radius of your home unless you were a worker with a permit to be outside of that radius, and you could only leave your home for one hour per day for exercise and one hour for errands such as grocery shopping.
Children had to stay at home and return to remote learning, parents had to work from home if possible, retail and hospitality venues closed and there was nothing to do and nowhere to go.
It has been eleven weeks, and from today, restrictions will ease a little. Because unlike Europe, our State government took extreme action. Difficult action, yes. Action with consequences for business, for workers, and for mental health. Absolutely.
Lockdown has not been easy. I don’t pretend that it has. But the alternative, tens of thousands of cases per day, is incomprehensible.
And now, as we ease slowly into a covid-normal summer, everything is waiting for us.
Put down the weight of your aloneness and ease into
the conversation. The kettle is singing
even as it pours you a drink, the cooking pots
have left their arrogant aloofness and
seen the good in you at last. All the birds
and creatures of the world are unutterably
themselves. Everything is waiting for you.
On repeat, to sleep
Because I cannot write
Instead I scroll and scroll and scroll
To avoid thinking
To avoid feeling
Words want to write themselves
But if I let them
I will break
And I cannot collapse yet
I still have to disappear
The curfew has been lifted. Hospitals are allowing one visitor per patient for two hours per day. That’s the rest of my week sorted because I have only time.
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.
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.
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
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.
I have been writing to Love. Not my beloved, although I do write to him as well, but to the Great Love. The Love of the Universe. Collective Consciousness Love.
I have been talking to Love and praying to Love. Because there’s not much worth being here on Earth for, except Love.
And then I found this song. But before I’d even listened to it, the title punched me in the throat. I had been writing to Love in an effort to dispel Fear. But what if I wrote to Fear? What if I spoke to it softly? Soothed it with a song? What if I couldn’t dispel all my Fear by writing to Love, what if I needed to write to Fear as well?
And so I did.
I wrote a love letter – a lullaby – to Fear.
When the miles are much too hard
And roads are too long
If my face in your mind
Is an unfinished song
And you’re sure that the right
is all heading for wrong…
Won’t you write the fear a lullaby
Remind her it’s okay to cry
And find me in the folds of your desire
Tell the worries in your way
To try again another day
Shut up and love me til they all expire
Coz I’m not done with you yet
And this weight around my neck
Is nothing but a make-believe goodbye
So write the fear a lullaby
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?
But I am learning to just be as I am, by grace and devotion to let go, to just let it be.