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Fears of flying monkeys limits accountability 

So, for those of you who like to keep track of my brave/stupid activities to advance the cause of Women in STEM, please listen to the ABC Radio National ‘Background Briefing’ Programme, by Walkley winning journalist, Hagar Cohen, about sexual harassment at CSIRO and University cover ups and gag orders, I was an unwilling party to, in my previous job.

The subject of this piece, however, is to discuss the inner workings of such an investigative piece, which somewhat compounds the insults already suffered by the victims. 

Contrary to popular belief, I don’t go looking for opportunities to take the moral high ground in specific cases (apart from my own) or launch bridge burning attacks on former employers. I was referred to Hagar by one of her ABC colleagues, as a person who had been brave/stupid enough to stick my head above the parapet on Gender issues in science in the past, including my own experiences of sexual harassment as a student

I gave Hagar a flat ‘no way’ to her initial approach…..but after a sleepless night examining the structural integrity of my moral fibre, I came to the ephinany of ‘If not me, who? And if not now, when?’ Several of my colleagues from the  ‘Twitterati’ had been similarly approached, as I found out in DM’ed conversations, full of hand wringing angst due to the taboo induced silence, facilitated by the risky shame of being seen to ‘bite the hand that feeds’ careers in academic research science. A taboo which I no longer suffer under, since having ‘flown the coop’ of the Ivory Tower some months ago (although previous convoluted steps taken by ‘the powers that be’ to gag my efforts to advocate for women in STEM issues provide a great cocktail hour story).

It was at her collegue’s suggestion that Hagar delved deeper into the story of Dr Ilana Feain and I had been previously made aware of a paragraph (subsequently redacted due to fears of litigation) on her experiences of sexual harassment at CSIRO in an ANZ Women in STEM piece by one of her Astronomy colleagues. 

But as the Internet is forever, see redacted copy here:

What her peers didn’t know was that while Ilana had been having sort of career young astronomers dream about, in the latter years she’d also been dealing with almost constant sexual harassment.
“There was a lot of grooming and then a lot of harassment and a lot of inappropriate conduct that was not managed properly which left me feeling extremely isolated,” she says. “I lost my confidence. I lost my self-esteem. That was part of what propelled me to look somewhere else to find a new, fresh and inspiring challenge to work with.”

Hagar is a talented saleswoman of any given narrative and I begrudgingly admired her tenacity and laser tight sighting  of the Achilles heel of her quarry. She sold me on the idea of corporate and personal accountability that her combined exposé may bring. The story was to be of a CSIRO Astronomy harasser (and the system that protected him) and also based on my evidence of the existence of a HR gagging order I was forced to adhere to, subsequent to a exit ‘deal’ being struck with a local bully in my old department. She had me pegged from the outset as a sucker for natural justice, a ‘failing’ of mine since I was a small child. 

The level of detail sought of the exact harassment allegations was something I strongly believe only a victim has the right to speak of, so I could only provide evidence for the internal University processes I had been involved in. Although I did consult with the main victim, to check she had no objections to me ‘Whistle blowing’ and using artefacts from her case. She was happy to let me help shine a light on the broken parts of the system, as like many victims brave enough to launch formal proceedings, she felt non plussed by the experience and the outcome. Understandably, she declined the offer to revisit the narrative of her own experiences, as she’d moved on and was very happy in her new role, away from the bench. 

I conducted the interview, careful not to make claims I couldn’t back up with the ‘black and white’ evidence I had provided, in case of legal challenges and had my photo taken in grim faced ‘Wonder Woman’ pose to provide a visual to accompany the story. I then popped by the Victor Chang Public Lecture series to speak as a patient Advocate against dodgy Stem Cells treatments before getting on a plane to speak at the EU Gender Summit in Brussels and see my friend Hilary, win the UK WISE Campaign ‘Hero of the Year’ award in London (these activities pass as ‘holidays’ in my world).

Meanwhile, Hagar, her producer Tim Roxburgh and team, were beavering away on the harassment story. As the publication deadline drew close, my interactions with them also increased as the ABC lawyers were nervous of defamation suits, if the perpetrators could be identified. Hagar was pushing hard to actually name both perpetrators but in the absence of victims willing to provide eye witness accounts (and also be prepared to testify in court, in any potential defamation cases) the ABC lawyers were not prepared to take the risk. I stated I was willing to testify in court about my claims (as it was evidence based truth) and even sounded out the NTEU (of who I am still a member, due to my loose affiliation with various parts of the university system) to see if they would take on any prospective case where I was prosecuted as a whistle blower on this topic. 

Ultimately, the fear of the ‘Flying Monkeys’ of potential law suits, meant the most of the finer details of both cases, including the names of the perpetrators, where stripped out in post production. Sadly, the victims who had been initially warned that the perpetrators would be named and perhaps themselves had (more) sleepless nights bracing for the impact of such a move, were again let down by ‘the system’ which again protected the guilty and of this opportunity for natural justice to see their harassers finally bought to personal account.  

As for me? I more interested in the statements made by the institutions involved as the PR damage limitation 101 pronouncements offered in reply did not even come close to holding themselves to account for systemic failures that allowed (and still allows) for these perpetrators to continue to ruin the careers of people they interact with in science. 

And if fear of litigation is the only currency to be spent in these systems….perhaps the ‘customers’ of academia, the students, need to start some organised sabre rattling of their own, like these US Students fighting back against the unwitting exposure to such perpetrators. 

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Vida perdidos: The event that changed my life

****TRIGGER WARNING**** Contains graphic descriptions of miscarriage 
It’s the end of the school year in Portugal and my only full beach day post conference, seems to have coincided with all of the primary schools in Porto, sending their classes to the beach for the day. As I walked on the wooden board walk, across the dunes, following a gaggle of happy 6 year olds, I was over come with a wave of melancholia, which sometimes hits me, when I think of my last visit to this beautiful country and my heart begins to break all over again. I think of the child that I lost here in Sept 2010 and as I meander at the end of the crocodile line of chattering school children heading to the beach, I wonder what that child would look like if it had survived.

It was the end of summer on my post doc at Leeds Institute of Molecular Medicine and I had just started a 20 week long animal experiment, which involved gavaging 80 Mongolian Gerbils with Helicobacter pylori and feeding them specially prepared diets, to control their iron intake. I had just had my contract extended on the EU framework 6 grant I was on, owing to the fact that I had declared my pregnancy as I had recently had the all clear 12 week scan. EU grants are more like contracts and do not cover employee maternity pay, so my employer Leeds University had to cover the extra costs and extend my contract to cover the generous paid maternity leave period accordingly. 

I had got over the first trimester hell of nausea and at 16 weeks gestation, was ready for a break in the sun, to top up my Vitamin D (not always easy to come by in Yorkshire) so booked a trip to the Algarve for myself, husband and 2.5 yo child. We chose a tiny beach isolated resort, off the beaten track, that had a kite surfing school. My husband is a pain to travel with, owing to his hyperactivity and must have a task to keep him occupied while I enjoy the ‘fly and flop’ aspects of a bucket and spade holiday.

We had a lovely 6 days, relaxing for me and my son and the right amount of exertion for my husband. I had a cold all week (as always happens when I relax!) and the last few days had a sore lower back, which I dismissed as a combination of viremia and the hideous mattresses in the villa we rented. We packed on the Thursday night, after a lovely dinner out as we were due to fly on the Friday afternoon, back to Leeds. I still had to clean the flat to ensure we got the hefty cleaning deposit back, but figured I before we left for Faro airport by taxi in the morning.

Just after midnight, I was awoken by contractions. I recognised what they were as I had given birth once before and got in the bath, while my husband started to ring for a doctor. We couldn’t raise a doctor and the nearest hospital was in Faro, 50 kilometres away. We started to ring for taxis…with no success, as I cursed my stupid decision to go to an isolated place carless. 

Of course, I knew that a full and progressing labour at 16 .5 weeks gestation, was only going to have one outcome. I got out of the bath and started to clean the villa, as my husband went to seek help at 1am from the bars in the tiny town. My son was sleeping while I finished cleaning and packing and by the time my husband had arrived back at the villa with a family from Lisbon, who could speak English (and had helped call an ambulance) I was sitting outside on a park bench under a street light with my suitcases and sleepy child, who was perplexed as to why mummy was so upset. 

The family from Lisbon waited until the ambulance arrived and their two tweenage daughters watched me as I sat doubled over, trying not to cry out in pain and grief (as I didn’t want that to be their first experience of childbirth). The ambulance finally arrived and as the paramedic took my vital signs and my details, I could feel the last contraction push the foetus out into my underwear (thank goodness I was wearing black pants and not a skirt).

I was put in the ambulance and my husband and child (and luggage) of course couldn’t travel with me. I vividly remember the horror and shock on my son’s face as they were closing the doors on a van with flashing lights that was taking his mummy away. I had no idea how my family was going to get to the hospital in Faro, but figured they could raise a taxi at some point. 

It was a standard hospital transport ambulance but after taking an ECG, my pre existing arrhythmia had sufficiently freaked out the paramedics and so we stopped en route, to transfer me to a MICA ambulance. Thankfully, the paramedic in this ambulance spoke English and I was lucky to have my EU healthcare card with me, so I didn’t incur any costs for my transport and treatment. The paramedic managed to get my pants off and then cut away my underwear. At that point, I told him the foetus had been delivered. He had a quick look and nodded with pity, to confirm what I already knew. 

We arrived at Faro hospital and I was taken to the obs/gyn ward. I was asked to get off the ambulance gurney into a wheel chair at that point. I refused, as I knew that I would feel the dead foetus dangling between my legs. None of the medics spoke much English but after a quick con-flab with the paramedic, they bought instruments to cut away the foetus. 

The last I saw of my baby was a small but perfectly formed translucently purple foetus, in a clear plastic container, being carried away. I was then overcome with a strong and visceral urge to call them back, to get them to tell me the sex of the child. This urge was then followed immediately by my pragmatic side stamping hard down on the neck of this desire, as if it had a sex, it had humanity….and perhaps it was best to keep it as a foetus in my mind.

I was then ushered into a side room, containing a bed with stirrups and a ultra sound machine. The obs/gyn doctor was an older man, whose hairstyle was reminiscent of an young Elvis Presley. There was a male and a female nurse as well, and the nurse was Polish and spoke English, unlike the others. I was propped up legs akimbo on the bed….expecting a procedure to remove the placenta, which had not been delivered with the foetus.

What followed can only be described as ‘veterinary’ and owing to the language barrier, I had no idea what was about to occur. The nurses stationed themselves at either side of my bed, near my head as Dr Elvis douched me with about a litre of cold saline. Then he nodded to the nurses whilst simultaneously plunging his arm through my dilated cervix, into my distended womb. The nurses grabbed me and held me down to the bed as I had cried out and jumped in shock at such an unexpected physical violation. 

I felt Dr Elvis pull the placenta away from one side then the next then bring it about in his fist. I asked to see it and said ‘Completeo?’ to which the reply was ‘Si, completeo’. I was then hooked up to a synthetic oxytocin drip, to shrink down my uterus, to stop any potential haemorrhaging. 

I was wheeled out to lie in a ward corridor, with several other patients at the overcrowded hospital. My husband appeared with my son for a brief visit, as men weren’t allowed onto the women’s ward at 3am. I asked them how they got to the hospital and the kind family from Lisbon had driven them with our luggage. They camped in the waiting room, as I remonstrated with the ward staff, to be discharged early, so we wouldn’t miss our flights home that afternoon. 

After 4 hours on syncotocin, the bleeding had slowed enough to be managed with sanitary pads. I had managed to sweet talk the skeptical medics, who wanted to keep me in under observation for the recommended 24 hour period, by promising that I would arrive home to Leeds within the business hours of my hospital antenatal clinic, to be checked by my own medical team. We caught a taxi to the airport and checked in on time for our Ryanair flight. I managed to get a pack of maxi pads in the airport chemist and we boarded the plane…..which then sat on the Tarmac for two hours, for an unfathomable reason. (Perhaps a snap strike by Portuguese baggage handlers?)

By the time we took off, my son was agitated and proceeded to throw up on take off and landing…a habit borne from anxiety he continued with until recently. We landed in Leeds and drove straight to Jimmy’s (my clinic was on the same site as LIMM where I worked). Due to the two hour flight delay, we had missed the antenatal clinic and was ushered up to the birthing suite, which is the only place you can find obs/gyn doctors out of hours. 

We sat, surrounded to the sounds of women in labour, giving birth to squalling infants, outraged to be pushed screaming into the world. In true NHS style, we were offered as much tea, sympathy and stale curling ham sandwiches as we could stomach, whilst we waited for a medic to get a window between births to examine me. Within a hour, a young Polish registrar came to ultra sound me, to check that Dr Elvis had removed the placenta properly. He gave me the all clear but told me to see my GP over the weekend if I was worried about infected and necrotic tissue. 

On the Saturday, I had a 2cm by 10 cm strip of placenta fall out and I then sought prophylactic antibiotics to ensure any left would not go septic. I consoled myself with the knowledge that I could try to get into see my fabulous female obs/gyn doctor on the Monday, when clinic re-opened. Dutifully, I rang at 9.05am on Monday morning, to request an appointment. To be told rather abruptly by the triage midwife ‘we all have miscarriages, get over it’ and that I was no longer allowed to visit the clinic as I wasn’t pregnant, until I had been re-referred by my GP to see my specialist.

Up until that point I had not shed one tear, as my pragmatic side had been in control since Friday. The dam then broke and the visceral flood of pain and grief washed over me like a tsunami. I was devastated to be treated so cruelly by a member of the ‘caring profession’ who then must have realised her mistake and promised to see if she could get me an emergency appt. When she rang back later that day, I had already been to my GP for the requested referral and I rejected her hastily arranged appt, much to her chagrin. 

I had never felt so utterly, utterly alone. 

It took until December 2010 before I got a chance to see my specialist. We were ushered into the ‘crying room’ of the hospital, a place designed for people who have lost babies pre term or to still birth. It had pastel plastic coloured couches and limp affirmations along the lines of ‘life goes on’, on the wall. It may have even had carpet (a rarity in a hospital). My specialist was horrified by the cruelty of the triage midwife and apologised on behalf of the hospital for such shocking treatment. We discussed trying again and possible causes of the late miscarriage (which at 16.5 weeks gestation, is normally the fault of the maternal environmental). I agreed and had plenty of theories after I had consumed the (surprisingly small) literature on late (post 12 weeks) miscarriages. I even wrote to Faro hospital (on my own hospital letter head) to request any pathology they had done on the foetus. I received no reply.

The experience of that miscarriage was the final straw for my time in the UK. I wanted to be back in Australia to be near friends and family, to be supported again. So I started to look for jobs back home. I checked the Deakin website, to see if the Geelong based medical school had any positions going, as it was my dream place to work. They had a 3 year fixed term entry level Lectureship going (aka my dream job). I knew my track record was slender and that I probably didn’t have a chance, but decided to toss my hat into the ring, just to get my CV read by the Head of Research, for future reference.

To my surprise, I was offered an interview and then offered the job, which I accepted, to start after working my 3 month notice period. Three days later, I discovered I was pregnant again. I arrived as a solo parent of a 3 year old, to take up the job in mid-May2011, 4 months pregnant. I managed to set up my lab (including an animal experiment) in the first three months, as we waited for my husband’s visa to come through. He arrived in the August and my daughter arrived in early October 2011. I was entitled to 3 weeks paid maternity leave from my employer of choice for women. 

This event changed the trajectory of my career and my life. It was the first (of several) object lessons that have taught me that while strategy and career planning is great, it’s actual life events beyond your control that can steer the ship, not you. During a subsequent ‘shit happens’ event, my MS diagnosis, I was given a full viral serology work up. I asked them to include CMV. It turns out, that I had titres for CMV consistent with a long past infection. Which makes me wonder if the head cold I had on that holiday was an infection that could have caused my spontaneous abortion.

Although, at the time, I was convinced it was Listeriosis from all of the Portuguese custard tarts I had consumed that week….although my specialist was more inclined to blame an incompetent cervix, and was tempted to stitch me shut, two days before I flew to start my new job and life in Australia.

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If you blog, will you lose your job?

Soooooooo much *THIS*

The Thesis Whisperer

I am publishing this post outside of my usual Wednesday schedule because I want to comment on a very live issue in Australia.

A deliberately unprovocative picture of the package of cheese snacks I ate while I wrote this post. Nothing political to see here. Moving on!A deliberately unprovocative picture of the package of cheese snacks I ate from a Starbucks in Canada while I wrote this post.

The Thesis Whisperer is truly a labour of love. It does not fit in my work week, which is filled to the brim with meetings, teaching and other commitments. I edit contributions and write my own posts during the weekend. It takes me about eight hours a month. I usually do this work on quiet Sunday afternoons when my boys are amusing themselves with video games, bike riding or some other activity they like to do together. I curl up with a cup of tea and my laptop on the couch, read guest contributions, edit, write correspondence and new posts.

I don’t want to be…

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Can we fix academia by disentangling the two core businesses of research and teaching?

Ah, I *do* love an Agent Provocateur, Adam.

But my only issue with this piece, is that as a course director, about to see the fruition of 3 years of Brainwashing undergrads to be Biomedical researcher ‘Engineers’ versus the (stable/ lucrative) Clinician ‘Mechanics’ , you need your top Research active people (preferably with skillz in ‘infotainment’), who can sell the ‘dream’, to overcome avarice.

Or at least sell future clinicians, the need to embed research for future job prospects (thus embracing their avarice) , as in the UK system. Hence the laggardly move to the MD model here. But the embedded research components, are barely Honours projects?

Lots of in silico data crunching for Clinical Epi is great for ‘sign posting’ in my research, but to find treatments for disease, we need rational drug design, which involves huge efforts to understand the basic underpinning mechanisms.

(after the 6-18 months to get your Ethics for Human/Animal/Biosafety through!!!)

Mel XX

Fear and Loathing in Academia

It’s been a while between posts. I’ll begin with two caveats. 1. I enjoy writing in stream of consciousness; think fast, write fast, let the warts be topics for discussion. Over-refined arguments are conversation killers. 2. I was an agnostic forced through the catholic school system. I took joy in arguing contrary points to extreme lengths just to see how far I could get defending them. A loss was often a win.

If you don’t like challenging your thinking, don’t read this article. If imperfect arguments drive you nuts, don’t read this article.

Cue 2015. Twitter is full of discussions of #ponzidemia and the unsustainability of academia. The ‘anointed’ professors get money, often for stuff they’re not best qualified for; track record is king. Junior academics are on the breadline, they spend all their lives submitting proposals, only to have all or almost all of them rated highly and rejected. Sometimes…

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Epic SciComm Fail, Mummy!

Dear Kids,

I am writing this missive to you, as I sit listening to your innocent games. It’s been a tough few months for our family, after I temporarily lost my sight at the end of last year and we found out sometime later it was due to an active lesion in Mummy’s brain, caused by MS.

I remember seeing the lesion on the CD of images, on that fateful day, as I sat by the Christmas tree. It was so large, I didn’t need a degree in medical imaging to understand that this couldn’t be normal or likely to be explained away as an artefact of the MRI process. As I zoomed in and out of the sliced brain images, I felt a dawning horror, but also a morbid fascination for the incredible technology behind the images.

I remember showing you both the images a few days later, when the initial shock had worn off and only the ‘Wow, that’s cool!’ wonderment remained. The contrast agent spilled out of the lesion like overturned milk, a bright white stain on the left side of my brain. I showed you the images as I wanted to explain what was happening to me, as a science communication exercise. My mantra of ‘you’re never too young to learn some science’ back fired spectacularly when I experienced your reactions to the abstract pictures.

Yes, I was able to now provide empirical evidence, to you, DS7, for my previous claims of being ‘Queen of the Zombies’ (a family meme I developed to ameliorate your fear of the bogey man and the dark) and you seemed mollified. What I wasn’t expecting from you, DD3, was the visceral reaction to the images. I considered you too young to see the images as anything more than abstract. But you reacted immediately with fear and loathing and proclaimed ‘Mummy, I’m scared of your brain! I don’t want a brain!’

Instantly, I knew I had made a science communicator’s biggest mistake, I had woefully misjudged you, my audience. I started damage limitation, by trawling the internet, to find a cutesy cartoon of the brain doing all the important work that keeps our bodies functioning, to show you. You, DD3, could not be pacified and I ended up having to take you to sit on my knee, whilst they infused IV corticosteroids ‘to fix Mummy’s brain’ at the hospital. I asked the poor Neurology Registrar to pick up the communication baton and explain to you that the brain was important. She struggled, as I had, under your uncompromising gaze.

Over the New year’s break, my sight came back, my right pupil returned to its normal size and my ‘Roid rage’ retreated. Many strangers (who I had made friends with, online) visited our home, to offer their support. You both seemed to adjust quickly to the new Mummy. But it breaks my heart to have you, DD3, role play everyday activities with me, that I’m often too exhausted to do now, in real life – like walking to the park and playing on the swings.

You both have now made career decisions based on my condition. You, DS7, have decided that cone shell venom could cure my MS (after watching an episode of Octonauts) – and hence want to be a research scientist, perhaps to work in my friend Charles’s Lab. You, DD3, have eschewed my dedicated grooming to become an Engineer and now want to become a medical Doctor.

How do I feel about you both wanting to have your futures defined by my illness? Non-plussed, to say the very least. Whilst I try to encourage you to question the world around you and cling to your current inherent wonderment, I want you to do that without the spectre of ‘fixing Mummy’s brain’ looming large in your collective consciousness. I want you to find your own path in this life, unfettered by such a filter. I want to have to same infinite world of possibilities that I had, when I was growing up.

My hope for you both? I just hope that as you grow up and away from your dependence on my care, that you also become somewhat complacent about my disease. I want the mundane minutiae of your self-obsessed teenage years, to replace your current worries for me. But I will support whatever decisions you make, as to your respective futures, for as long as my cognitive abilities hold. When you are much older (even though you, DD3, are eyeing off my diamonds already), we will have to discuss my future and my plans for a controlled and dignified death. I hope you will be well down your life paths by that time.

Love Mummy (aka Queen of the Zombies) Xx

(Image from ZomTeez )

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Critically endangered co-dependence

This week has been a fairly rough one for this normally optimistic person. I had an attack of the ‘what ifs’ (generally a sign of imminent over thinking, in my case).

I was having a typical grief reaction (which have become common enough in my life in the past few years, for me to recognise the process) but strangely enough, I wasn’t grieving for the future loss of my faculties, due to my recent MS diagnosis…I was grieving for the future I had expected to have…up until that fateful day, just before Christmas.

Now, as most regular readers are aware, I identify very strongly as an active scientific researcher. And my grief reaction was triggered when I started to consider the current ‘fight’ I’ve been engaged in as an EMCR for the past few years (common to many of my peers, like the wonderful Nikola Bowden ) and whether I could continue, in light of my recent diagnosis.

As outlined in the previous post ‘Know your enemy’, many people have extolled me to keep up the ‘fight’. Some are referring to my health ‘battles’ but some are referring to my current EMCR struggle. I also get the standard advice (sometimes from the same people) that I ‘need to look after yourself as a priority’.

Now, I was already juggling a young family (including a disabled son), heavy teaching/service requirements as well as trying to eek out a semblance of a research career, in the absence of big grants that would allow me to employ staff (even part time) to help me wrangle my growing gaggle of PhD students.

As I think of these students, I now find myself making decisions that could be construed as ‘leaning out’ (in the Sandberg sense) as the result of my diagnosis. I have started making alternative ‘plan B’ for their future supervision, in case I find myself unable to stomach the continuing ‘fight’.

Now, engaging in this process led me to the slippery ‘what if’ slope of calculating the amount of resources allocated to me, to conduct research. Expensive labs (including the shiny new one I helped design…under construction as I type) and small (but cumulative) amounts of money for consumables for my students.

I began to realise the seeming futility of it all and the waste of research resources I would represent, currently…as an EMCR dabbler and most certainly in the future, if I did what is best (for my health) and I should extricate myself from the research component of my tenure. This dawning horror was almost too awful for me to contemplate…but I was considering it…even though the very thought, was causing a lump in my throat (I am welling up as I type…and I am not one prone to such histrionics, normally).

On the way home from work that day, I was able to blink back the tears long enough to reach a deserted beach. As I walked towards the water’s edge, the dam of grief broke and waves of sobs poured out of me, to be heard only by the hooded plovers (who’ve got their own problems).

I must have stood on the beach, body wracked with grief spasms, for a full 20 mins. Then my habit of reflection started to break through my visceral reaction. I began to ask myself: What are you grieving exactly? Are you grieving for your lost future self, snatched away by the shock of the MS diagnosis? Or are you grieving the loss of your expected future, which contained some delusion of a glittering research career?

Then I realised, that for me…these two things fairly much equate to the same thing. Almost immediately, I acknowledged that this is not a healthy mentality and perhaps has hallmarks of the mindset of an addict, or someone co-dependent on the validation given by an abusive relationship.

I arrived home later that evening, with eyes still raw from crying, though dry enough to pass muster from both husband and kids. As I sank onto the couch…my husband asked me what drink I wanted. ‘Gin’ was my one word reply. He was perplexed (as I am currently on Febfast and not supposed to fall off the wagon….particularly to use alcohol as an emotional crutch) so asked he again. My reply was ‘Gin’ once more.

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Know your enemy…

As I sat having ‘date night’ as a patient on a 6-bed Ward last night, after an epidural ‘blood patch’ for complications arising from last week’s lumbar puncture, a random visitor decided to enter our (full) ward and engage a woman in conversation.

He was visiting a family member in the next room, but clearly decided he was some kind of self appointed ‘life coach’ and wanted to ‘cheer up’ random strangers in other parts of the Ward. He targeted a 91yo woman, who after patronisingly calling her a ‘young lady’ and commenting on her ‘pretty face’ asked her personal medical questions. After finding out she was to have a hip replacement the next day, then regaled her with stories about how he broke his leg once and that it all turned out fine. He then started wheeling out some fatuous positive affirmations, one gem of which was: ‘I’ve got a three letter word for you, N.O.W’ and the words ‘brave’ and ‘fight’ may have been used.

The nurse assigned to our ward was at my bed, doing my obs, when this man was subjecting the woman to his unsolicited bonhommie. We simultaneously *eye rolled* at his braying and I whispered to her, ‘Does he know her? What about respecting other people’s privacy?’ At that point, he introduced himself to the lone woman & the nurse immediately seized on his name and use it to politely (but firmly) dismiss him from the ward with a sentence. I was in awe of her efforts!

But it did cement something I had been pondering about my recent experiences going ‘public’ with my health issues. Previously (when healthy) and having been a cancer researcher, I was often discomforted by the ‘you have to fight this evil disease’ meme that often surrounds this condition. In fact, I disliked it so much, that given the first opportunity to return to the clear cut world of infectious diseases, I took it!

The ‘Us’ versus ‘Them’ narrative of infectious diseases is one that readily lends it’s self to the ‘battle’ and ‘fighting’ memes. A foreign agent has invaded the body and must be eradicated (with minimal damage to the host and the other ‘good’ guys). It’s an easy narrative to exploit for science communication especially with younger audiences.

However, the use of the ‘brave fighter’ in a ‘battle/war’ meme is used with cancer, autoimmune attack and [insert any non communicable disease with significant morbidity and/or mortality here] is not entirely appropriate. I concede that it may be just me that feels this way, and is probably born of a superior knowledge of the cellular mechanisms of disease and an interest in veracity in science communication. ‘Me’ versus ‘Myself’ maybe more accurate from a cellular perspective, but is not as clear cut as ‘Us’ versus ‘Them’. Fighting your own cellular mechanisms that have gone awry sometime seems a futile ‘battle’ and hence can be isolating for people who understand this.

But as the doyenne of cultural memes, Prof Deb Verhoeven (@bestqualitycrab) pointed out in a twitter conversation on such, the ‘brave fighter’ metaphor ‘implies agency and responsibility where none might exist’. She then pointed me to this book by Susan Sontag on the topic.

Others placing an expectation of ‘warrior’ status on a person trying to deal with a life limiting or life ending condition, for which there may be imperfect or incomplete medical interventions available, can be an extra burden. I have had much support for my recent issues, but if I had a crowd funding campaign attached to a ‘chronic illness bingo’ card and got $5 every time people have used the word ‘brave’ or ‘fighter’ in reference to my good self and my ability to ‘beat’ my issues, I’d be rich!

My training gives me added insight and abilities to make connections whilst reading relevant literature. However, even if I came up with a new treatment in the lab tomorrow, it would still take 20 years to develop into a drug used to treat people with my condition (which is still undetermined) even if it was shown to be safe and efficacious in clinical trials.

But until then, I’ll be focusing my ‘brave fight’ to the existing ‘battle’ to change the current state and federal laws to allow voluntary euthanasia…because I may need the option, sooner than I had originally anticipated.
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