Sunday Bookmarks #15
Hello on a very sunny Sunday, which feels both like a non event, given it is mid July, and also a revelation, as the weather seems to have an entirely separate agenda unrelated to months or seasons. I have always loved the sun, often telling people I would be a nicer person if I lived nearer the equator. Imagine my dismay when I realise that the symptoms of my illnesses are exacerbated in the heat, how hideously unfair.
Reading // Sorrow and bliss
To use the most obvious pun, what a blistering look at complex mental health experiences, parenthood and intergenerational family trauma. Although unpicking such themes requires sensitivity, Mason seems to toe the line between acerbically sharp commentary on the realities of living and loving someone with complex needs, and continuously darkly funny one liners reminding the reader that, all in all, interpersonal family relationships are always taxing, illnesses or not. Throughout the novel, main character Martha is experiencing an unnamed diagnosis referred to by the final psychiatrist who diagnoses her as “- -”, thus as readers we are only left to perhaps use our own misguided judgment and pre disposition to decide what it is that Martha is living with. Far from asking readers to become armchair psychologists, it feels as though Mason is telling readers that what exactly Martha has been diagnosed with, holds little bearing on her lived experiences. Although labels are often helpful, and necessary in accessing care and much needed attention in medical spheres, the words themselves mean little, and that is coming from someone with a list of acronyms and conditions that follow their name.
Some of Martha's actions were painfully recognisable, the self sabotage and jabs at the people you know only want to love and care for you. Extremely hard to read in places, from both Martha’s blackened perspective of hopelessness and her partner and sister, reaching the end of their patience in caring for someone, who from their perspective, does not seem to want to be helped. Yet throughout, Mason maintains a light hand, moments of audible laughter, and often absurdity in the situations Martha finds herself in; a tattoo of an island she has never visited on her thumb, a live laugh love journal bought in a station WHSmith, the infamous sabotage episode of great British bake off, and the list goes on.
It reminded me in a round about way, of another book I just started, The Way We survive: notes on rape culture, by the talented activist and writer, Catriona Morton. She is discussing, as the title suggests, her own and others experiences of sexual violence, harassment and abuse. Similarly to Mason’s novel, it is painful to read but again, relatively close to home. Cartiona talks of the good survivor and the perfect victim, and through exploring her own reactions to horrific crimes against her, how much she relied on the people around her to read her mind. She has the trauma replaying behind her eyes on a near constant basis, so why can’t everyone else see it too. This struck a nerve, for so long I thought part of being in love meant having a partner that could practically read your mind. The two of you are so in tune that there is no need to explain how things make you feel all the time, you are meant to just get it. It transpires that is (obviously) not how it works, and as boring as it is, communication whether that is related to mental health, trauma or physical well being, is essential to a relationship, romantic or not.
Listening // In Good Company
Very much enjoying coming late to Otegha Uwagba’s podcast series ‘ in good company’, there is nothing more joyous than a long extended back catalogue of episodes to listen to. I miss those days with Adam Buxton’s show, 100’s of episodes to listen and re listen to, now i get irritated each time he goes on scheduled season break. A couple of weeks ago I raved about the episode with Paris Lees, and I am back to tell you the episode with Mona Chalabi, creator of actually useful instagram graphic illustrations highlighting social justice issues is similarly wonderful. Chalabi shares her experiences with career success, the risk to cost benefit of being freelance, cultural taboos, stigma as a young woman in media and the idea of ‘money dysmorphia’, a concept I found particularly interesting to listen to, and somewhat intersecting with the experiences I have as a disabled person trying to navigate working worlds.
Living with // Freedom day vs the end of freedom
This is my final weekend of freedom, as politicians announce Monday as the day of freedom: masks are no longer mandatory, there is no rule of six and covid, from the eyes of those in charge, no longer poses a large enough risk to justify continued government intervention in the lives of its citizens. It is now up to us, the individual, to use “common sense”, “sensible judgment” and “kindness” to protect others around us. If I have learnt one thing in the past year, it is that, no one, not even the ones who say they are good, are kind, are caring, give a single shit about their actions impacting those who are vulnerable to this virus. At this point, I feel like a broken record. People in my life are likely sick of my infographic reposting, my rearranging of plans and downtrodden aura. And to be quite frank, so am I. I am fucking sick of trying to make people care. Of feeling like the one who can't just let it all be, I am sick of muting people I love on social media, of thinking every time I see a photo of someone I cared about / and I thought cared about me, in a crowded bar or an airport queue. I don't understand how you can preach social justice and intersectional feminism, how you can claim to be interested in the experiences of disabled people, but think the answer to your conundrum over whether to spend Saturday night outdoors in an open green space, or shoulder to shoulder with strangers in a packed venue, is to just not invite your disabled or vulnerable friends. You get your cake and eat it. You get to have all the fun you want with no guilt that you might inadvertently kill someone you care about, because don't worry, they’re safe at home, waiting for this all to blow over.
Being disabled and having energy limiting chronic illnesses means I am sick of the sight of my own four walls. And now I am going back inside, retreating to where it is safe. Last week my partner said, he knows his response to the pandemic would have been different, if he didn’t have to worry about me. His actions have, for the most part, been protective of the risk covid poses to my health, and I am so aware of what a strain that has taken on him, his social life and essentially, every choice he has made. He, and I, certainly haven’t always got it right, we have taken risks for small ounces of joy or moments of release, but he said he was surprised neither of us had contracted it, I said i wasn’t. I guess when the risk to yourself, not another, the thoughts are always lingering, even in periods of joy and respite.
Although he is essentially employed to “think”, outside of his day job he isn’t much of a ponderer, a worrier yes but a deep thinker? No. I am the one who carried most of the emotional labour of the pandemic. Organising food shopping, vetting plans and routes and always the one to cancel when the risk to joy ratio swung in the wrong direction. It is hard to not feel guilt, as the party pooper, we are young, we want to have fun like everyone else we know, I am stopping that, because I am the sick one, the disabled one. I am not sorry, I am glad we remained cautious, moreover so he didn’t contract COVID, less so myself.
My biggest fear through this pandemic, is that people I love end up with energy limiting chronic illnesses, glandular fever was the catalyst for mine, and COVID will be the cause for so many more. I don't want anyone I love to have their life profoundly altered by something that, with caution, can be avoided. Millions of people have been diagnosed with ongoing symptoms such as fatigue, exhaustion, digestive issues and insomnia as a result of contracting even a mild covid infection. As institutions around the world race to find solutions to these nebulous symptoms (a bitter pill to swallow for those of us who've been gaslit and ignored for years), my overriding thought is, why would you risk it? Most people wouldn’t swim in a lake if there was a chance of being bitten by a crocodile, and wouldn't eat in a restaurant with a track record of food poisoning, so why would they want to play roulette with their immune system by dancing in nightclubs and hugging strangers when a team scores, whilst a virus plagues the entire world. i guess it is two fold, in general someone’s risk adversity, how they analyse situations for risk to reward benefit, and the ongoing prejudice that conditions like M.E, Fibromyalgia and Long COVID, are all in a patient's head, a little bit of extra rest and you'll be ok. Unsurprisingly, those first two conditions have disproportionately affected women, and who cares about us anyway.
Catch you all on another part of the internet,
Hannah x