Vulnerability

I was sick for most of the holidays. In the space of a week, I had two visits to hospital, three visits to the GP, four lots of blood tests and four prescription medications. I am slowly on the mend. Turns out I had two different viruses and reactive arthritis. It was, by turns, messy, miserable and excruciating. Enough said.

A home-bound holiday was enforced on everyone, with less sun and more screen time than intended. I must acknowledge my wonderful family here – a partner who parented intensively and nursed surprisingly patiently; a brother who entertained and cooked meals; parents who chauffeured me to medical appointments; and other family members who phoned and texted daily to offer support and raise morale. Since I was too sick to read – almost unknown in these parts – I am also grateful for Netflix (image below from Miss Fisher’s Murder Mysteries).

Image result for miss fisher hospital

It brought back a lot of emotions from my past experience with chronic pain – fear of interacting with my children (the way they bounce, bump and rock the fragile body in the sick bed), despair that pain and incapacity might be ongoing, and guilt at being outside of family life. It wasn’t pleasant to experience this vulnerability again – not only physical weakness, but the intense emotional burden of being unable to care for others. The other stark reminder was how slowly time passes when you are in pain. Day and (sleepless) night, you remain firmly rooted in your physical self for every excruciating minute.

Although she writes for a different context – single parenthood (and I ache for single parents struggling with illness) – one of my favourite bloggers Andie Fox (of bluemilk) writes this about the precarious structures of home life:

I am apprehensive about remembering just how exhausted and vulnerable I was. I can describe it no better than this: When you are a single parent, the home you build sits atop stilts and if the structure gets more than the smallest of shakes it begins to wobble in such a way as to pick up its own rocking momentum. A dangerously gyroscopic effect. In this way, even relatively moderate upsets can lead to a collapse in the entire thing.

And her balm? Poetry. So, here, an extract from Unmatching Legs Ode by Sharon Olds on her arthritic legs:

I don’t know why I am fairly cheerful
about my unmatching legs.
… I have always
liked my legs, the double stem
which lifts the big odd flower of me up
and up. It’s as if I fell in love
with them, when they and I began
to learn to walk together. The two of them were
best friends, who could press against each other
and feel the love, at the top of the stalks …
I’m sad they will rot. I wish our bodies
could leave us when they are done with us –
leave our spirits here, and walk away.

Cathartic writing

In a recent post I mentioned my daughter’s epilepsy and my implanted neurostimulator for pain management. I write about these experiences, among others, in a newly published book chapter in Being an Early Career Feminist Academic. Look at this lovely cover:

You can read the Times Higher Education review here:

It is sad that this book is so relevant. Indeed, it is depressing that it has to be written at all. Yet it is necessary and urgent that the realities and contradictions of surviving as a feminist academic are told, so that collectively we can begin to address the current situation and share responsibility for changing it.

My chapter presents an autoethnographic account of mothering an ill child during PhD, and coping with secondary infertility and ectopic pregnancy as an ECA. I also analyse survey data from Australian women ECAs with caring responsibility for children (I will post on this topic in future). I have found autoethnography a valuable tool for slow academic work. It began as a way of managing critical incidents related to my daughter’s illness while writing my PhD, and offers space for reflection, enabling me to bring lived experience into my research and write more freely. It is cathartic.

Here is an extract from the autoethnographic account in my chapter. An earlier version of Epilepsy appeared in feminist journal Outskirts. As an aside, Electricity is a corrected version as I just realised that I put the wrong dates in the book, and somehow lost a year.

Epilepsy

You were ten months old. As we were getting ready for work and childcare, I pressed my lips to your forehead, and came away burning. Your temperature was 38.4 degrees. Just after I gave you some paracetamol, you had a convulsion. Your legs and arms were stiff and shaking, your back arched, your eyes rolled back in your head, your mouth frothed. I called an ambulance. On the phone, I was almost incomprehensible. You went limp, your breathing was erratic, you turned blue. When the ambulance arrived, you were unresponsive.  In hospital, you had another convulsion with a temperature of 38.2. You had tests—blood, urine, mucus, EEG, lumbar puncture. Everything seemed normal. The next morning in hospital, just after Dad had left for work, you had another seizure. You were unresponsive and blue. You were no longer breathing. Very quickly, we were surrounded by two doctors and four nurses—attempting to trace your heart rate, monitor your oxygen level, attach an oxygen mask, insert a cannula, take your blood sugar level, prepare a glucose drip and revive you. In the midst of the chaos, a doctor accidentally stuck a needle into his own hand. At that moment, the “clown doctors” arrived—laughing, throwing balloons, blowing bubbles, and playing silly horns. I watched a bubble settle on your bruise-coloured cheek in the seconds before a nurse screamed “Get out!” and pushed the clowns from the room.

Twenty minutes later, you were sitting on my lap eating a bowl of pureed pear. The doctor described it as an “acute shutdown”, the most extreme reaction to fever she had ever seen. Two months later, just after your first birthday, we were back. On arrival in hospital, you were taken straight to resuscitation. Once again, your system had shut down, but you didn’t have a fever. Your blood sugar level was recorded as 0.8 (normal is between 4 and 8). You were in hospital for five days. Once home, Dad took your blood sugar level every morning. We held our panic close, and tried not to show each other the whites of our eyes. Four months on, another three hospitalisations and the diagnosis was uncertain. A year on, we had lost count of your hospital stays and your seizures. You have epilepsy. An MRI showed damage to your left temporal horn and temporal lobe asymmetry. On hearing of your birth, the neurologist said we were lucky to take home a live baby. We keep a hospital bag packed. You grow beautifully. You take your medicine. You are strong and joyful and fierce. I write these experiences into my PhD. My supervisor comments that this unconventional approach makes him “nervous”.

Electricity

In August 2011, I had an ectopic pregnancy. I was meant to be teaching my first class of the semester on the night I was hospitalised. The surgery to remove my right fallopian tube was complicated. My uterus was perforated and I suffered extensive nerve damage which caused chronic pain. I was on a lot of medications; to the extent that my specialist asked whether anyone at work had noticed my six month sedation. In April 2012, I had my third lot of abdominal surgery in nine months. Yesterday I wore an academic gown in the graduation procession; today, an immodest hospital gown. I had a neurostimulator implanted in my abdomen; this runs an electric current alongside the nerve and replaces pain with a tingling sensation. I recharge it regularly. You describe me as a little like Astroboy; I prefer live by Haraway’s (1991) manifesto: “I’d rather be a cyborg than a goddess.” It has been a life-returning success. Six weeks later (three years in the making), I am pregnant.

I haven’t yet received my copy of the book, but very much looking forward to reading the other chapters that cover precarious work, feminist identities, transgression and resistance.

Why slow?

Last week I listened to Kate Harris, CEO of Good Environmental Choice Australia, present on courageous leadership to a group of early career academics. She shared this image (from startwithwhy) and asked people to think about why they do the work they do:

Image result for startwithwhy

Kate made herself vulnerable and shared her purpose, motivation and inspiration. Her grandfather’s dying words to her were: Make peace in this world. And she dedicates her life to this goal. Her words inspired me to think about why I wanted to start this blog, and why I value slow academia.

Earlier in the day, I bumped into two colleagues – one whose partner recently died, and one who is in the early stages of cancer treatment. Both were at work, and working through shock and grief. Work can be distracting and colleagues can be nourishing … but something more important is going on for these colleagues. This, I realised, is why I consider slow academia crucial.

I recently read Being Mortal, a surgeon’s account of how medicine struggles to cope with dying, and it is a book that has made me think more than any other this year. Gawande writes about the way in which the perspectives and priorities of those close to the end of their lives changes:

When you are young and healthy, you believe you will live forever … And you are willing to delay gratification—to invest years, for example, in gaining skills and resources for a brighter future … When horizons are measured in decades, which might as well be infinity to human beings, you most desire all that stuff at the top of Maslow’s pyramid—achievement, creativity, and other attributes of “self-actualization.” But as your horizons contract—when you see the future ahead of you as finite and uncertain—your focus shifts to the here and now, to everyday pleasures and the people closest to you.

Two experiences in particular during my formative years as a PhD candidate and early career academic shifted my focus.

I have already mentioned the birth of my daughter ten years ago. What I didn’t mention, and what sometimes seems the most defining aspect of the last decade, was what happened. As a result of placental abruption during birth, and after repeated life-threatening seizures as a baby and toddler, my daughter was diagnosed with epilepsy. We live with the consequences of her illness daily.

I also live with a chronic pain condition, following complications during surgery for an ectopic pregnancy. I now have a neurostimulator implanted in my abdomen, which runs an electric current alongside the damaged nerve and replaces pain with tingling. I have it on 24/7 and my once constant and immobilising pain – which severely negatively impacted everyday living – is now manageable.

These experiences are why I advocate for slow academia. When I finished my PhD, and when I became an academic, other things already came first. Work matters – it has to matter because sometimes it takes me away from what matters more.

A recent Twitter exchange illustrated this:

‘I wish I hadn’t worked so hard’ is among the top five regrets of the dying. The future is finite and uncertain. My focus is the here and now, everyday pleasures and the people closest to me.