#if i have to read one more essay on why vivienne is actually the worst person alive for the crime of disagreeing with the player

[faerun]

can i say something that might get me doxxed on here....... i dont particularly care for fenris

[pasdhospitalite]

Context to the video ‘Not Coping (Conversation over Lunch with Mum) Video 1/1 on me, her, and MND’

In the video (please read the description on Vimeo and then this before watching AND before reading this - trigger warnings are on the video link page) my mum is surprised because she doesn’t think I’m a panicky person. I explain to her the trauma and panic I kept secret when I knew she was terminally ill. I knew this for sure about 5 years ago exactly (November 2013) although the official diagnosis came two years after that (late 2015). The context of this video discussion is that my dad died suddenly on 22nd October 2013 and my mum went for what she thought was a relatively routine nerve conduction study to get to the bottom of why she had a weak grip and muscle wasting in her right hand (we thought nothing of it) a week or two after my dad’s funeral.  As soon as that study was done and I saw the reaction of the consultant and his refusal to tell us what was wrong with her I knew something was wrong. I pressed him and he said “she has generalised muscle weakness that she’s not noticed. I will write to your GP and I cannot diagnose her”. I categorically do not recommend self-diagnosis or diagnosing others. But I went home and started researching. I did not yet recognise that my obsession with diagnosing her and processing her terminal illness before the official diagnosis was a symptom of my ill health at the time.  But I went home and started researching. I still had institutional log in access to academic journals because I’d taken an immediate, and what I thought was an indefinite leave of absence from my PhD at Royal Holloway upon the death of my dad from a sudden heart attack. I concluded that she had Motor Neurone Disease and, based on her age and accounting for large data sets in studies into MND and mortality that she had 2-3 years to live at best (only 10% of sufferers live a decade or longer with the disease and they tend to have been diagnosed at a younger age) and that she had the worst disease imaginable. I was not and still am not a doctor and so this diagnosis and its obsessions was a mistake. But it has been born out in reality. She has now been living with MND for 5 years. Don’t diagnose yourself or others around you. Wait and see until you’re given an official diagnosis. You can deal with whatever it is and carrying a burden of thinking that you or a loved one has got something awful wrong with them before you actually know for sure is quite literally (I choose that word carefully) unbearable. 

Putting that advice aside (I hadn’t taught myself it back in late 2013) my mindset at that time was that my dad had just died suddenly (I was grieving) and that I’d ‘found out’ that my Mum had an awful, awful disease and only had a few, increasingly unwell years left to live. The progression of the disease results in progressive and near total paralysis and respiratory failure with no effect on cognitive functions (usually). I resigned myself to quitting my PhD, or radically reformulating after her death, moved home from Oslo, and threw myself into being a chef at a Michelin starred restaurant in East Yorkshire. I knew I needed to work and to do things with my hands and to be part of a team. And I knew that the trauma I was experiencing would only get worse (or thought I knew) and I couldn’t even face the idea of reading a book or writing or researching or thinking about banal corporate art in airports, or returning to a different country away from my mum during the process of her dying. And I knew that she was dying 18 months before she got the official diagnosis.  In the video I discuss how I COULD NOT HANDLE (the only time I’ll ever capitalise for effect, I promise) all of this knowledge and grief and the anticipation of trauma pressing on me. We discuss coming to terms with terminal illness (there’s a lot of happiness still to be had) and not bottling things up. I’m currently detoxing from benzodiazepines and I explain how I started using drugs like that in the video too. The video is mainly audio and out of focus. 2 years ago I started trying to make a ‘proper’ film about my mum, bought a v expensive DSLR and audio recording kit and was totally paralysed by the responsibility I felt to make the right kind of film. All that thinking was total bullshit internalised on the basis of what I thought was expected of me. Fuck that. This is important too for context of starting, just starting, to make work about me and my mum and MND: On New Year’s Eve of 2018 (nearly 3 weeks ago) I started to draft a Facebook post thanking the people really close to me for giving me joy this year. I realised I could not do this without explaining why I’ve needed so much support over the last 5 years. So before I knew it I’d written 2000 words and the fireworks were going off on the TV and the essay had turned into the detailing of my dad’s death and my mum’s diagnosis so that the people I was thanking could understand why their support and inspiration has been so important to me, and especially how the joy and pain I have experienced in the last 18 months has been so important to me as healing. I’d also gone off on tangents, written really angry paragraphs about a perceived lack of support from Royal Holloway in the two years after my dad died (they terminated my PhD on a technicality) and still not gotten to thanking anyone.  That essay of trauma and thanks would probably reach 10,000 words and nobody would read it. I’d put it on social media and tag all the people and then they’d feel obliged to read it and that might be a burden. Plus, I’ve decided that having conversations like this with my mum is a better way of exploring issues of anxiety, depression, substance abuse, terminal illness, bereavement, family addiction, panic, perhaps undiagnosed PTSD on my part, and love, and joy, and pleasure. (We’re doing really well, by the way) I am only able to do this because I have got much better mental health now because I sought help after a panic attack in Spain (discussed in the video). But I am also fully aware that I am also only able to do so because of the amazing support I have received over the past 5 years from family and friends. I believe in situating one’s knowledge and that means acknowledging what makes it possible for me to be able to speak, to film, to function, to not collapse. It is especially over the past 18 months that I have met fearless artists who speak from the heart and seem to be brave without limits. I realised that I could be brave too and just say whatever I wanted to say about my life however I wanted to and that I couldn’t care less if anyone thought I was stupid or my speaking had no value or that I wasn’t worthy of being heard.  But I do care if this kind of story telling is useful for other people dealing with similar issues. I don’t want to cause harm. If you think I’m causing harm I want to listen to you. Please contact me.  So, here is all that thanks without that bothersome tagging that can seem as much selfabsorption as genuine and radical gratitude. I’m thanking these people either because they have always been there for me and are unequivocal friends who I can rely on and put my life in their hands if I need to, or because they’re amazing role models and have given me hope and fire and zest and inspiration. I’d become a person who hid for a few years. I’m not hiding any more.  It’s no coincidence that the majority of people I’m thanking are woman. I hope I can give as much as I can take. Thanks to, in no order of importance, Tom Williams, Rosalind Williams, Claire Stansfield, Jon Stansfield, Phil Johnstone, Cogs Stansfield (no relation, I think...) Dan Morris Lea, Natalie Morris Lea, Kathryn Thomason Stripling, Richard Thomason-Stripling, David Parkinson, Rachel Houmphan, Max Houghton, Lewis Bush, Jane Thomason, Grace Oni Smith, Jasmine Johnson, Vivienne Griffin, Lisa of @BlueBagLife (sorry I don’t know your surname!), and Rachel Pimm. I’ve hyperlinked to your work to point anyone who might have gotten this far to how AMAZING it is!!! If I believe people should insist on welcoming an unexpected guest three times then I should give thanks three times too. Thank you, thank you, thank you. There’s joy in the video. If you’ve got this far I hope it’s useful.