Tag Archives: scicomm

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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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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