We are still in Lockdown 5.0 in Victoria. I’m not sure how many weeks it’s been now. Two? No. Three? Like I said, I don’t know. So, I’ve reverted to spending hours consuming what I call “wholesome content” to keep me sane: Mostly YouTube–which is as close to a time machine as we have–and Mariah Carey, whose song Hero was released at the end of my sophomore year in high school.
I’ve also been reading, and have just finished The Believers by Sarah Krasnostein, and am now devouring Song of the Crocodile by Nardi Simpson. I’m still reluctant to call it reading, because I’m mostly listening on Audible; I don’t have the ability to sit still to read with so much anxiety coursing through my veins. But I’ve “read” more this year via Audible than in the last three years together, so that’s something.
And for anyone else who also needs a little lockdown pick-me-up, last year, the Phillip Island Penguin Parade was livestreamed during our 112 days of hard lockdown in Melbourne–and they are bringing it back from tomorrow night. The Speed Cubers on Netflix is a documentary about friendship and the fastest rubik’s cubers out there. And added recently to my rabbit-hole (and not on YouTube) is an Irish dancing group called Cairde. Apparently they have a TikTok, but I don’t, so I watch them on Instagram.
We are hoping some of the lockdown restrictions will be eased tomorrow. I’m hoping I’ll get the results of my 7th covid test that I had this afternoon. And, more than anything, I’m hoping they’ll be negative.
Anniversary season is hitting differently than I expected–in a good way. Yes, it is overwhelming to be revisiting all the dates of medical procedures and big information, but overwhelming gratitude has been the predominant feeling.
Today is the one-year anniversary of the day I took G back to hospital to begin the staging scans and assessments prior to treatment. By now, he’d had multiple CT and PET scans, an MRI, and a brain biopsy–which is as risky as it sounds. He had been diagnosed with primary CNS lymphoma, all within ten days of me taking him to the hospital, but it was this week coming that they performed further scans–lumbar punctures, ultrasounds, ocular exams and more PET scans–to confirm with certainty that the cancer was only in his brain and not anywhere else in his body (which would have made it secondary CNS lymphoma).
We are four days out from the anniversary of the commencement of his treatment, fifteen days away from the anniversary of him being placed into a coma, and sixteen days from the night they called me to say his organs were failing.
And yet, here we are. One year later. He is outside, pacing, as he speaks to someone from work on the phone. This is typical; he always preferred to stand and move when having conversations in the before times, and nothing has changed. He is working. Not a lot, just a few hours per week, but working nonetheless. This time last year, we assumed treatment would be a linear process. He would go to hospital, have chemo, it would work (or it wouldn’t) and he’d come home. We did not expect nor account for any of the complications he experienced. By the middle of September last year, we weren’t sure he’d ever work–or walk–again.
And yet, here we are. Grateful is an understatement.
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.”
It’s International Women’s Day 2021. And while this song seems like an appropriate feel-good anthem for today, in Australia, this IWD comes on heels of several weeks of rape allegations and sexual assault reports within the Australian Parliament. But why not there? They occur in every other type of workplace. In every school. And in many homes.
I am too tired for rage this year. I have been angry about the misogyny and sexism that is rampant in my daily life for more than thirty years. And I am so very tired. So this song is more aspirational than it is accurate. But you never know, maybe one day.
I am not tired enough to keep fighting, though. To keep exposing sexism and misogyny for what it is, where it is, when it occurs. And to keep expanding my understanding of other people’s experiences. So if you want some great books to read by brilliant Australian/Australian-based women, here are a few of my faves for you to choose from. And if you can, please buy from your local indie bookstore.
We spent today in Melbourne for an appointment with the infectious diseases specialist who is treating G’s hip infection, for blood tests, x-rays and an MRI. We will get those results next week.
I am tired. It takes about 12-14 hours a day to do everything I need to do to care for G and get all the jobs done around the house. And that’s when other people aren’t making extra work for me.
It feels like others are able to just go about their normal lives. Australia is largely protected from the worst of the pandemic and these days, restrictions are relatively relaxed. People are moving about and moving on with their lives. And I am standing still.
I let the day go by I always say goodbye I watch the stars from my window sill The whole world is moving and I’m standing still
While watching the Australian Open this last week, they played a short clip of The Weeknd’s Blinding Lights as they cut to an ad break. Both G and I started singing and continued even as the ads began to play.
“This song is addictive,” I said as we arrived at a place where we no longer knew the words. I googled it and brought it up on YouTube. “I can’t explain it but it gives me the same feeling as Robert Miles’ Children and Darude’s Sandstorm. It’s compulsive. As soon as I hear it, I have to play it on repeat until the feeling subsides. Do you know what I mean?”
We tumbled down a rabbit hole of 80s synth and 90s dream trance as we tried to find other songs that filled us with the same feeling. I still don’t know what it is about the composition that makes this music so compelling to me, I just know it floods me with memories I’m not sure I have–flashbacks of nights in clubs, dancing like I’m the only one on the floor, laughing with dates in coffee shops, screaming as I ride rollercoasters at Disneyland for the fifteenth time that day, having friends in my 20s, being liked by people; a life I only imagine.
Which isn’t to say I didn’t have friends, I didn’t go dancing and I didn’t ride rollercoasters–but there is something in this music that drives a nostalgia I cannot name. And I wouldn’t want to. It’s enough just to feel it.
For some reason, YouTube seems to be showing me a flashback of my playlist in 2010 as I search for music tonight. It’s almost impossible to fathom that eleven years have passed since I changed the course of my life. In early 2010, I began treatment for an eating disorder that had comforted me on and off for almost fifteen years. I left a marriage that was nominal only; my husband far more interested in women inside his computer. I had no idea what I was doing. And I was so ill, there was no guarantee I’d live to see the end of the year. So eleven years feels like some sort of achievement.
In December last year, I hit a personal record for the longest time living in the same house. At the end of May this year, I’ll reach another milestone–seven years with my beloved–and not one “break” or break-up. These things may seem trivial but when our future–indeed, our present–has felt as precarious as it has in the last eight months, they are my touchstones. So tonight I’m remembering the woman from 2010 who was brave enough to seek help, brave enough to leave, and brave enough to live. And I’m saying thank you. These songs are for you.
Songwriters: Aaron Short / Alisa Xayalith / Thom Powers