Finding Balance, or at Least Trying

It’s been a while since I updated this space. A lot has been shifting around me — settling into new routines, part-time university, and trying to navigate the ever-tricky line between rest and productivity. I’ve started my history and archaeology course, and while I want to follow the advice of well-meaning people and focus on small tasks without thinking about output, I have to admit it only made me feel worse.

My body clock has been all over the place, dragging me into darkness earlier than I’d like, which has meant hauling out the sunlamp and vitamin D supplements again. Seasonal affective disorder is relentless, and I can’t pretend it’s anything but the worst.

Still, there’s something undeniably beautiful about this time of year. Sweater weather, leaves falling, the subtle shift of the light — moments like these make you stop, breathe, and notice. Yet, resting too much recently started to feel less like rejuvenation and more like decay. It didn’t even feel like me. People tell me to slow down, but I’m not sure that’s feasible. There’s a cost no matter which side of the fence you land on: overwork hurts, but inactivity corrodes in its own way. Finding new limits — knowing how much to give and when to pause — is trial and error. There’s no map, only practice.

It also brought back memories of academic abuse elsewhere, and the sheer lack of empathy I’ve seen among artists for each other as performers. Theatre, a field that seems to promise sensitivity, often delivers anything but. I recall a lecture where the tutor said that anyone who hadn’t shat in a can, or taped a banana to a wall and called it art wasn’t an artist. The irony — that this type of work was meant to challenge the bourgeoisie, which included my lecturer at the time at Brunel — hit me hard. I don’t belong in that space, not because of my output, but because of how I engage with art. I want to understand the author’s mindset, dwell on the darker topics to make sense of them. I see theatre through a historical lens, not purely as an artist, even as I write my most unhinged poems. I feel it because I feel it, I do it for the love of it, and for the story, and sadly that means that I don't socialise the process enough and focus on the work itself, not the brittle egos around me. Therefore, compared to others who network better, I am only ever going to fail, regardless of talent, regardless of zeal, regardless of intellect or understanding. It's not a meritocracy anyway. 

The painful thing, is that for the artist that shits in a can and calls it "100% Artist's shit" has more in common with the people that are mocked for being losers and misfits than with the academics who hail them, and seek their own applause from their students...More to the point, when you're in a field of study like that, a lot of teachers didn't want to teach, they wanted to be famous. They don't love the subject enough to teach it, for the sake of teaching, they're actors and musicians who want to gatekeep who gets famous or not, because they're frustrated at their own anonymity. The greats were usually not even celebrated while they were alive anyway... It's the injustice and lack of empathy I struggle with. When I act, when I sing, when I write, it's not about the reception, it's real, it lives in the moment, not the recognition of the moment. I feel too deeply for the character who's skin I am wearing, and not enough for the people who hold my recognition and success in their hands. 


History is less tweed jackets, corduroy trousers and dusty attitudes about who has swallowed a dictionary, and who hasn't and more about resurrecting lost stories, finding connection to the past and empathising with those lost souls... Something I always sought out with Classical music, with opera, and with Classic Lit, or theatre. No one has made me feel stupid here, despite the fact that I say it about myself, that I am not academic, or even intelligent. I'm just an actor, someone who reads books too much, and writes poems she will never publish because they're too embarrassing actually...

I by my own admission said that acting and such is very different to history, that I myself don't know what I see in this subject or why I am doing it, as I am not very smart really... The answer was "I see you...It for you, is common empathy, stories, people... You love people. " and honestly, yeah... That's also why I read tarot... 
I love people and their stories. I have this horrendous radicalised idea that people are people, and all deserve a modicum of empathy and respect. Which put that way sounds absolutely wild... People love to talk about high brow and low brow entertainment, and the birthrite it takes to enjoy them and how middle and upper-class folk are "cultured" and those that are grass roots are simply not, and shouldn't have access to these things, regardless of financial cost.. Self-policing etc... And we live in an era where I can log into youtube and watch a full-length ballet danced by the Bolshoi dancers if I really wanted to.. We live in a  postmodern era, and yet, spending a bit of money, or watching a play on youtube is stepping outside of societies' harshly drawn margins, and spending a shitload of money at a dodgy pub, is socially acceptable and even celebrated...  If you think about what Richard Dawkins said about what it means to be alive, I worry that most don't even know they're alive... The combinations of DNA and who could have been here, and yet it is me who is here... and you, (all 3 of you who read this I guess.)
That's your birthrite to enjoy art and beauty right there surely.. You were born, That's enough. Perhaps I don't think clearly enough about class connotations and how they should police my understanding. On the surface, Lysistrata is a Classical play written by Aristophanes, and that alone is not standard knowledge among the great unwashed... Have you ever seen it though? It's bawdy, and I love it... Female empowerment, a slight queer undertone (My language) Penis jokes... A Lioness on a Cheese Grater! (hahahaha!) Tell me now how that is only to be enjoyed by the privileged few? I think it is actually hilarious. 
Sort of like, how Shakespeare is so wildly taken out of context and closed off. Artistic gatekeeping is vile. I'm sorry but it is. Perhaps I am not an artiste since I can not get on board with that way of thinking, as I am too "Grass-roots" for such a space. 

Taking a pause from this blog helped me assess the cost of resting too much. Even battered bodies need active minds, and some of the voices telling me to slow down are barely doing much themselves. It’s a slow process, but I’m learning.

The recent conference in Cardiff was a bright spot, though tempered by anger. Hearing about further cuts to crucial medications made my blood boil — I’m too angry to unpack it properly here. But it’s clear something must be done, we aren't spreadsheets to trim down, we aren't greedy for wanting to live, and thrive not just exist as yard sticks to mock. We are fortunate to have a team that sees us as people, not case files. These doctors genuinely care, and for that, I am profoundly grateful. My permanent allocation went through, no more rationing inhalers. It felt almost too good, and I hesitated to write it here for fear of jinxing it. I also, officially no longer have the pseudomonas bacteria in my lungs... I'm not going to drown in my chest and wait for respiratory failure as "Just another situation where there is no point helping someone like you" Intervention happened. I was worth interceding for.  I could barely even adjust my tone to act "correctly" but ask "Are you SURE? REALLY GONE? I will be OK? ..." What I meant was "I am ALLOWED to recover? I was worth investment?" 
I was so beyond relieved when the doctor told me this that I could not process it. I give everyone nicknames, and I call that one "The Terrier" small, frighteningly intelligent and when something is found, doesn't stop digging. The reality is, that if this bacteria was entirely unchecked I would be living a different story, and that team, once again saved my silly little life. People agreed that my silly little story was worth preserving. 
I was not treated as a minority outlier that could be collateral damage for those more able-bodied, for a fault in nature's code when I was born. A sacrifice financially for
 "The greater cause". For the sake of sustainability of those more fortunate than I was. 
"Thank you" didn't even scrape the sides for how I felt. 

No clinician can act relentlessly without the backing of such an incredible team.  The Prof. really does run a tight ship, and if I wasn't found by him and his team back in 2019, I am not sure I would have been here with the last few years I have had.. I had a fight on my hands to even get the tests to get a diagnosis all that time ago, a situation many spoonies face regardless of subject, regardless of situation or location. Rare diseases are a pest to diagnose... because they're rare, and well... process of elimination always takes time. 

That chest infection was a near miss just earlier this year, could have become entrenched if left, covid another near miss, honestly, so much nonsense that didn't need to happen the way it did.  No one's fault, just faulty logistics, and money. Wealth over Health etc. Do I idolise the guy? A little, honestly. He acts with integrity in a space that loves to cut corners, cut costs, and call it "The greater good". He doesn't believe in getting things "good enough, baseline" or telling his patients, to just settle for less than breadcrumbs. He cares about each patient having a normal quality of life for THEM, not what's passable, repairing what's viable, and leaving the rest of an entire person to rot. He doesn't write people off, that's admirable, and the research? That's a whole feast in itself. On an individual basis, the individual's average, not an average found in a textbook for "People like you" with the bar set firmly in hell. 
But imagine if I never knew I had CVID in the first place? I doubt my life would be as it is right now. I would never be able to rebuild, and there are others sicker than me, that would not be here. I think that counts for something. 


Studying again has only shown me how much time was taken from me. 
How much could have been lost, how hard it was before, namely because of symptoms that were not managed, basic things like a throat infection without antibiotics can trail on for weeks and derail a semester, and then another... To forgive myself for the multiple failings that could not have been corrected, or for speaking a different energetic language than those in charge of my future. I do feel I was always a square peg in a round hole, that with enough filing, shaping, and sacrificing parts of myself I too could fit, after sustaining the injury of not fitting. 
I'm also not sure if fitting in is the same thing as belonging anymore.  Put simply I am optimistic, but really going through it at the same time!, healing is ugly. 

Settling into new routines is never easy. Any kind of organisation — academic, personal, or medical — takes effort, patience, and repeated recalibration. But I’m finding my rhythm. The balance is still fragile, and the line between rest and decay is thinner than most admit, yet I continue. 

Clare Alexandra