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.
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”.
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.