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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The Holly and the I.V.

As I sit here in the hospital, hooked up to an intravenous infusion…the last of five I have since the Monday before Christmas, I’m reflecting on my sudden change of status from ‘medical researcher’ to ‘patient’ with my dealings with sundry colleagues in my Dept (Med School) and the local collaborative Hospital.

The back story of this ‘sudden event’ in my life was I had a shunt from behind in my car at the end of Nov, just after my trips to the Gold Coast, to be a key note speaker at QUT IHBIinspires student conference, and to Canberra to participate in the AAS SAGE gender equality conference.

I had an instant headache, minor neck soreness…took 2 paracetamol & got over it. Within 30 hours, I had suffered acute demyelination of my optic nerves resulting in homonymous hemianopia (perhaps completely independent of minor head trauma from car accident). So spent my 40th birthday in early Dec semi blind…and not in a good way! After a couple of trips to the Ophthalmologist…who took 9 days to refer me for an MRI…as she didn’t have time to do the Vision field test at the first appt, I then had to wait 8 more days before they stuck me in the MRI tube…by which time my vision had returned 90% so I could drive myself to my scan.

On the day, I made gallows humour jokes with MRI techs about going in the tube for whiplash and coming out with a brain tumour. After they made me go back through with contrast…immediately, bumping their list, I knew something was up…(and was no longer laughing). I went to pay and the notes were marked ‘urgent’ and the admin lady didn’t know the code for what the MRI folk saw. I found out the next day (when I got results at the GPs) it was suspected tumefactive MS…she’d never seen it before, as too rare?

As they had sent me home from my MRI with my CD of 313 images the day before…and I had already seen the large lesion for myself on the on the contrast scans. Had sent the series that looked dodgy, via twitter DM to a mate who is a consultant specialist in Geelong (who offered to have a crack at rudimentary Dx). He called old MS lesion or scarring on the scary looking white patch on the scan. So…I was braced for impact when I got the full annotated MRI result from the GP the next day (Sunday before Christmas)

At 9 am Monday 22nd Dec, I emailed the referral letter directly to my chosen specialist….The head of the Clinical School at work, with whom I sit on several committees. He rang me that arvo, told me to get to the day unit immediately as he had arranged his Registrar to start mainlining a broad spectrum anti inflammatory (corticosteroid) into me as needed 3 days IV…and we had only 3 days left before Christmas. So I spent parts of the next 3 days, fielding shocked looks & urgent questions from my pharmacy & ID colleagues, who run the day unit. (No such thing as medical privacy when you work in a small regional Med School and collaborate with many clinicians at the Hospital!)

I managed to make the Med school end of year staff BBQ, with the IV line hanging out of my arm, to which one jolly japster (who shall remand nameless, to protect reputation) remarked, ‘Well, you’ll be able to mainline gin, now!’ << very tempting!

I didn't really sleep for a week over Xmas/New year….I've definitely had better festive seasons! I've spent a lot of time, talking my 3yo off the ledge, as she freaked out when I showed her the MRI pictures…she was convinced she didn't want a brain, as they appeared to be too much trouble (Epic SciComm fail there, Mummy!) My 7yo son thinks I really am Queen of the Zombies now, as I have empirical evidence for bits missing from my brain. I've also had IV iron x2 and IM B12 but my VitD levels are nearly double the recommended 50 units… 86! My proudest recent achievement…! Due to my love of (unhealthy) levels of sun exposure.

I was excited and humbled by the out pouring of support I received from my friends and followers on Twitter, many who came to support me 'in real life' over my time at home, adjusting to the prospect of having a condition (as yet to be fully diagnosed) that may be progressive, chronic and perhaps in time, send me functionally blind.

At the moment, I'm awaiting further tests: A lumbar puncture to confirm or deny presence of oligoclonal bands in CSF (15th Jan) and further (stronger) MRI (20th Jan) to see if IV & oral steroid (course finished 2nd Jan) has changed the lesion at all..and to check my whole spine for other lesions. These should then enable a step closer to a diagnosis, allowing for more nuanced anti inflammatory treatments, such as humanised monoclonal antibodies, that block the Individual inflammatory mediators (cytokines) or the molecules that T cells use ( alpha 4 integrin) to stop them crossing the blood brain barrier, to launch an cytotoxic autoimmune attack. But my serum also needs to make a trip to Germany, to check for John Cunningham Virus antibodies….and a positive result would rule out the use of the integrin blocker mAb…due to a nastier secondary side effect leading to other major immune defects.

But back to work on Monday, where I have to deliver a new unit for my course, that I was supposed to be writing in Dec/Jan/Feb…but I've lost 3 weeks of work time due to blindness. I'm hoping I can make a case for employing a casual academic to help me out in the next 6 months as I am unsure that I will be able to work at the same level of intensity as before. We shall see….!

(Thanks to @ad_mico for the idea for the title)

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Smart Geelong Week 2014

Phew! What a week, Smart Geelong Research Week has been! For an early career researcher like myself, I had an embarrassment of riches to choose from, for inspiration during the program. And my penchant for ‘live tweeting’ when I attend such events, saw me in the front row, madly tip tapping on my tablet, so that the Geelong based folks who follow me on Twitter, could ‘see’ the proceedings.

On Monday, we had the launch with keynote speech, delivered Professor Terry Speed (Walter and Eliza Hall Institute, Melbourne) who is a recent Eureka Prize winner for science engagement. Introduced by Barwon Health CEO, David Ashbridge, Terry then gave an excellent and accessible talk to a large crowd on the topic of ‘Epigenetics’, which he defined as the ‘punctuation marks’ to allow the appropriate expression of physical characteristics for the ‘text’ of our genes in our DNA. Professor Frances Quirk, Head of Research, Barwon Health, then gave me the priceless networking opportunity (thank you!) to join the party taking Terry to dinner on the Pier.

Wednesday saw the Barwon Health Research Week Poster session and the first speech from my collaborator and new Deakin Medicine Chair of Orthopaedics, Professor Richard Page. Richard regaled us with his distant family history in Tasmania (involving the sly grog trade) as well as offering advice to newer researchers (always say ‘Yes’ and Innovate, don’t emulate).

Thursday saw the launch of the Inaugural Smart Geelong Network Harrison Lecture, named to honour pioneering Geelong innovator James Harrison, introduced by Addy Editor, Nick Papps. Harrison was a polymath, who educated himself at night school around his day job and savvy enough to recognise the potential of evaporative cooling whilst chemically cleaning his news printing die sets.

It was standing room only at the National Wool Museum & the Geelong innovators who spoke, Professor Saeid Nahavandi from the Deakin Centre for Intelligent Systems Research (CISR) and Mr Steve Atkiss, GM of the Deakin Carbon Nexus, gave fabulous insights into the ‘toys’ they had made, including robot movement simulators and carbon fibre Storm Trooper armour. Some of their staff and students were on hand with the more ‘portable’ toys to let us have a play!

Friday evening arrived and with it, the Smart Geelong Network Gala Dinner, and thank you to my colleague Dr Sarah Shigdar for shouting my ticket! It was good to see both federal politicians from Geelong, Hon Sarah Henderson MP and Hon Richard Marles MP, were able to get back from Canberra, for the evening. The guest of Honour was the Hon Barry Jones (one of my science heroes) who was there to present the inaugural Barry Jones Medal to Sue De Gilio, one of the founders of the Smart Geelong Network and a worthy winner. The other major prize of ‘Researcher of the Year’ went to newly promoted Professor Bronwyn Fox, leader of the Carbon Nexus project and an inspiration to all women in science and engineering.

My week didn’t finish until Saturday lunch time, after I took part in the Deakin 40 years celebration at the Geelong Gala day parade. Spurred on by our fearless leader, Professor Jane den Hollander, we waved our flags at the crowds lining the route. Surely, the good people of Geelong were bemused (or perhaps entertained?) by the incongruous sight of academics in full robes and regalia, playing volleyball with a giant inflatable world, with their boss? I certainly relished the opportunity to disrupt the stereotype that we are elitist and stuffy boffins, scared of leaving the ‘ivory tower’. Jane shouted us to an impromptu coffee afterwards and I got to introduce her to my husband and kids. I also got to chat to Saeid about his three adult children as he scrolled through his Facebook photo roll. Those labelled as ‘Smart Geelong’ have much in common with the rest of the people of Geelong – we are humans.

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No(cebo) holidays from Quack-busting

I have recently returned from an idyllic family holiday on a tropical island in Fiji. We has a lovely time (although it took me at least 5 days to wind down from a busy and sometimes stressful year) and naturally gravitated towards chatting to other families with young children, while we were there.

We met a few lovely couples with kids…and each of the young families had medical conditions which made my heart sore to hear of. One father had Multiple Sclerosis and the baby of another family had Cystic Fibrosis. As a mother of a disabled child, I did not belabour any points with these folks or offer advice as they seemed reconciled to these conditions and happy to be on holidays relaxing.

However, the third family we met had a story that made me very angry. The young father got speaking to my husband about a ‘diagnosis’ he had received which purported to be a genetic mutation in the MTHFR gene. My husband dobbed me in as a medical researcher straight away (cheers!) and I was dragged off my sun lounger into the infinity pool to continue the discussion. It quickly became clear in conversation, that this man had chronic back pain and had resorted to alternative medicine after his GP had failed to take him seriously (and hence refer him to proper pain clinics in his local area).

He had been ‘referred’ to a naturopath from other CAM practitioner, who promptly used a cheek swab to get DNA for a genetic screening test. He had been told the results and that he had ‘compound hetero mutations’ in his MTHFR gene.

This gene encodes for the enzyme Methylenetetrahydrofolate reductase (MTHFR) which plays a central role in folate and homocysteine metabolism by catalyzing the conversion of 5,10-methylenetetrahydrofolate to 5-methyltetrahydrofolate, the primary circulatory form of folate. This precursor is then used in homocysteine remethylation to methionine.

I told him that I would do some research on the topic overnight (as the resort Wifi was better than my local fraudband at home) and get back to him with a better explanation of his ‘condition’ the next day. I also contacted the specialist chronic pain anaesthetist and my quack-busting drinking buddy @mickvagg for advice on this genetic test…as I was starting to suspect a pseudoscience wheeze, used to sell nutritional supplements. I also contacted @doc_andy_w for GWS pain clinic advice and @DrChromo for the clinical genetics angle. I love my tweeps! They are always happy to help out!

Mick’s response and the results of my research here and here confirmed my fears…that tests for common SNP polymorphism variants were being used to sell supplements to this man. He admitted to taking a ridiculous amount of such he had been ‘prescribed’ by the naturopath. He also reported that his chronic pain problems had not resolved as a result of ‘treatment’

I made these notes for him, which I sent via email:

Dear Cxxxx,

Just some notes I made from my online research after speaking to you about MTHFR gene polymorphisms.

Anti-Quackery article from a reliable source related to MTHFR gene polymorphisms.
http://www.bloomberg.com/news/2012-12-21/autism-cures-promised-by-dna-testers-belied-by-regulators.html

Nocebo effect: http://en.m.wikipedia.org/wiki/Nocebo << in your case, you have been told by a non specialist (who's goal is to sell you nutritional supplements) that you have a genetic disorder that has been correlated with various illnesses. Correlation does not equal Causation in medical research. But the neurological effects of believing something is very wrong with you, can damage your health.

Sciencey MTHFR gene info: (PhD in genetics and Biochem helpful to fully understand this article. Not really lay-person friendly) http://www.ncbi.nlm.nih.gov/books/NBK6561/ << Points to note from this book chapter: Only 50 people ever have been diagnosed with the 'true' mutation which knocks out the enzyme completely. Most people with the more mild mutations have 2 copies which work at some level (just not quite as fabulous as those without these mild mutations).

Genetic counselling services NSW: http://www.genetics.edu.au/Genetics-Services/genetic-counselling-services << These guys will be able to explain the whole thing very well (and test you properly & will not try to sell you anything) but it may take a while to get in to see them, as they tend to deal with kids with life threatening illness like Cystic Fibrosis. You will also have to ask your GP for a referral to these kinds of clinics.

Westmead Hospital pain clinic contact info: http://www.wslhd.health.nsw.gov.au/Back-to-Life—Pain-Management-Program/Contact-Information

Westmead Hospital Pain Clinic referral online form (get your GP to fill it out during an appt) http://www.wslhd.health.nsw.gov.au/Back-to-Life—Pain-Management-Program/Referral <<It is possible to self refer to this clinic, but it would look better coming from your GP

Good Luck!

Cheers, Mel

My incandescent rage stemmed from the fact this man was worried he had a genetic condition that he had passed onto his two gorgeous children. None of the implications of having a genetic ‘condition’ had been explained to him by a qualified genetic counsellor, he had just been baldly told the results, sold some supplements and left to Dr Google for advice (which when I checked, was heavy on convincing looking US based quacks and light on any real info on this ‘condition’…probably as the reduced functioning of the enzyme leading to raised plasma levels of homocysteine, had been associated with several common diseases but no causal links had been firmly established….as I checked PubMed on the topic too!)

The man was profusely grateful that I had taken the time to check this out on my holiday and sheepishly admitted to being angry at himself for being taken for a chump (he was a salesman by profession).

I explained to him that even if he has a pair of mutations in his MTHFR gene that are deleterious…that due to basic gamete haploid genetics, he had NOT passed on the condition to his children…and the only way they would currently have it, was if his wife also carried similar mutations on the same gene in BOTH of her copies (or they had already suffered De novo mutations in the same gene). I also said the chances of either of these being the case were fairly slim, but if he was still worried, the Clinical Genetics Service at his local teaching hospital would be able to test the entire family and also explain what is currently known in the medical literature about the SNPs for MTHFR and any health implications (from an unbiased perspective…as opposed to a CAM business plan angle).

He wrote to me soon after we had returned to Australia to tell me he had already been to his GP to demand the referrals I had recommended he ask for, for his on going pain condition and to the local Clinical Genetic Service.

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Brainfrastructure: Part Two ‘Precious Petal’ Demonstration

This is a science communication piece to provide a metaphorical display of what may happen to our chances of developing a productive Knowledge Economy in Australia, if the advocates for science are ignored.

This is my reponse and represents personal views and not those of my current employer.

‘Precious Petals’ reference here Update here

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