Cancer, Colostomy and my Goth Identity

I have an identity that is surrounded by elements and ideas that deal in darkness and death. How is it possible that I can continue with my following of Goth culture now that I have been dealt my own, chillingly personal, taste of real mortality? I honestly don’t know. I am not Kurona the Goth anymore. I am Kurona with Cancer. Kurona with a Colostomy. My diagnosis has robbed me of my identity.
Its easy to think of Goth as a subculture dominated by a music genre and a fashion following. So why would my diagnosis interfere so much with that? Because for me, it is something that goes far deeper than simply wearing black and listening to loud music. During my time studying cultural history, I have discovered the roots of Goth culture go back far further than a music based revolution of the 1970s and 80s, all the way back to the latter years of the 1700s, and the beginnings of the Romantic Movement, and of the Gothic Revival. It was a cultural explosion born of the French Revolution, caused by a desire to reject the cold, hard science of the Age of Enlightenment and to rediscover and embrace a love of the past, for the beauty of the picturesque and the mystery and magic of the sublime, and the allure of darkness and beyond. It covered all corners of Art, Literature and Architecture, and spilled into the veins of the Romantic Movements of the 19th Century. The wave ran throughout the 1800s and crashed after the First World War, it was abused by the Nazis during the Second World War, it found a hiding place in The realms of Middle Earth, Narnia and Gormenghast, ridiculed by the modernists of the 50s and 60s, until it was reborn through the music and alternative art movements of the 1970s and 80s.
In those times, death was a constant presence in the outside world, not hushed up and hidden away like it is now, despite our stereotypes of Victorian prudishness. It was loud and it was vivid and it had its own place and belonging in Art. 19th Century Gothic is filled with references to death. In fact, an entire culture all of its own sprang up around it. From ideals of “the good death” to burial customs, a “Cult of Mourning”, Cemetery Architecture all of its own with its own unique messages and symbolisms, to Memento Mori Photography and Keepsakes of departed loved ones, to whispers of ghostly activity, séances and contact from the “beyond”. A long, slow, “romantic” idea of death and of mourning dominated art and literature and fashion.

Its easy to imagine a sick gothic maiden of 19th Century Art and Literature. Perhaps even beautiful to imagine her. It’s anything but beautiful to BE her. I am not reading this story, I am living it. Conjuring the mental images of reclining into a chaise longe, falls of untamed pre raphaelite hair and flowing pseudo-medieval gown, a pale face with a heated tint of rose, coughing blood into a hankerchief, regretting the opium heavy lifestyle and the mortal pricetag that it carried.. That is no challenge for me. I could easily invent that character as much as re enact her. she is ready to die the good Victorian death and be loved and remembered by all, forever.
But is that going to happen to me in my reality, in the modern world? I think not. The reality of dying with Cancer is ugly, messy and terrifying, far removed from the Victorian ideal associated with a long and drawn out wasting disease. Plus I highly doubt a life trapped in the benefits system is going to grant me the Gothic funeral or gravestone I want.
While my identity is not limited to the music I listen to or the clothes I wear, they still feature very heavily in my expressing of it. My fashion following ideally is something of a Medieval/Victorian hybrid, with a little Industrial and Cyber for good measure. Though it is difficult to find gothic clothing that both caters to my size, shape and sensory comfort, let alone poor budget, so ordinary days are often spent wearing very ordinary clothes, just with a strict gothic colour scheme of black with a hint of maybe purple or red or teal. I don’t tend to go crazy on makeup much either, no chalk white cheeks here. Just a little black lippy will do just fine. My music taste is far removed from the likes of Siouxsie or The Damned, favouring more Symphonic Metal and Dark Ambient, Neo Medieval, Viking and Industrial/EBM.




My interpretation of Goth having been born of the Gothic Revival influences the books I read. And those I write. The Art I produce. The places I go to in search of inspiration and peace. The way in which I decorate my personal space. Even the mental “safe space” I am being trained to create is itself a gothic edifice. I love the darkness of nighttime, as darkness seems to possess so much more truth. I love the Art and symbolism found in Cemeteries, Churches and Graveyards. They’re peaceful, beautiful places far removed from the chaos and noise of the living world, As well as losing myself in the perfect atmosphere for althe kind of chilling tales I revel in. I love Autumn and I am a bonefide Halloween Queen. I love broken things and abandoned places. I listen to stories of true hauntings, true crime and unsolved mysteries to go to sleep. It is the heart within my heart. And Cancer has broken it.
I’m in love with the darkness of the night
I’m in love with all that’s out of sight
I’m in love with the magic of the moon
And the darkness loves me, too
Xandria, “In love With The Darkness”.
There is more to be said for embracing darkness and shadows. Something that goes beyond even literature and art and finding inspiration. It gives me somewhere to hide. I have CPTSD. I have failed to get anywhere further than square one for my entire adult life. It has been a ride of constant struggles, illness, conflict and hitting brick walls and dead ends. Life seems to want to show me lovely things, then take them away again. What are you to do when you feel that life doesn’t want you? You embrace Death. I became Goth because I am grieving for a life I couldn’t have. I embraced Goth as a trauma response as much as an inspirational calling from the night. I am Goth because I am angry, with myself for failing at life and at life for failing me. There have been many times where I have seen Death as the only alternative to living through what I was experiencing. I feel for the things and people and places that have been broken and abandoned and forgotten, because I have been there too. But now I have Cancer, and Cancer could kill me. Everything has changed. Where I once chased beauty in darkness, where I had surrounded myself in beautiful associations with death, they aren’t so beautiful anymore. They make me feel sick.
Is it a prerequisite of being Goth to love death? If so, I will have to count myself out. I feel I am on the verge of abandoning my following of Goth altogether. when faced with my actual mortality all references to death, to horror, to all those things that once filled me with inspiration now make me feel sick and frightened. The music i once loved now triggers me, and the thoughts of permanent, inescapable darkness, stirred up by cemeteries, skulls and coffins fill me with dread instead of inspiration. I feel like a hypocrite, a contradiction. One half of me wants to be healthy and prolong life for as long as possible and has an irrational fear of just ceasing to exist, while the other half has had enough, too exhausted to fight anymore and just desperate for it all to be over with. I can even say I hate being alive because I am being forced to endure death. That long, drawn out, slow death so often depicted in the Gothic Art and Literature that I love is what I truly fear the most. Far more than my fear of falling out the sky in a plane crash, getting mangled by a car or just suddenly dropping dead in the middle of watching the TV. I had long hoped that it would be quick, painless and doing something I loved.. maybe a bizarre urbexing accident. I don’t want a finite amount of days where I can count them down with acute awareness, where every minute I will be desperately seeking pleasure, desperately making the most of what I experience for the final time, and hanging on to any scrap of hope but knowing all too well that it is too late. Can I even call myself Goth when I am clinging this tightly onto life? Was I ever truly Goth? Or just a fucking joke?
Should I be lucky enough to survive this, Am I going to owe life some kind of debt for my second chance? Perhaps paid for in abandoning Ghosts and graveyards and embracing sunshine and butterflies? Will I ever feel comfortable again, let alone comforted, drifting through graveyards and ruins?
And should I somehow survive this Cancer and this surgery and hold on to my Goth identity through this, how am I going to live as a Goth with a permanent Colostomy.. A Gothstomate? How will I be able to wear goth clothes with a Stoma and a bag full of poo to accommodate? I don’t know how I will be able to show my face in my clubs or at my concerts without the fear that I am being constantly looked at and judged, knowing what gross things are going on under my clothes. I don’t know anyone in my Goth Community with a Stoma that I can reach out to, to ask how they cope, how they can wear their clothes and go to their clubs without feeling like they stand out with their disability. In fact I don’t know any Goths with Stomas at all. I feel utterly isolated.
I have caught myself daring to dream of one day perhaps being able to model Goth fashion as plus size and disabled, be a representative for Ostomates in the Goth Community, as so far I just haven’t seen any to help me feel less alone, to give me any confidence that I can carry on wearing my signature style, that I can continue to identify as Goth. But that may only come from surviving cancer first.











