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 )