How my terminal diagnosis lead me to modelling for an artist nude and a sacriligious reckoning with my physical self.
When I was diagnosed with Motor Neuron Disease I died. I am 33 years old. I come from a broken family marred with trauma. I was a school failure. I have been bullied and had my stint as a bully, neither of which were pleasant. I have been sexually assaulted, homeless, subject to domestic abuse, suicidal, too fat, too thin…and now I am dying. Are you f**king kidding me?!
I went through the stages of grief that come when something comes to a cataclysmic end. I shouted at my family, I shouted at my friends, I shouted at God, I shouted at myself, cried a bit, and then shouted a bit more. Wallowing in self-pity is part of the routine now and I try to schedule it in around actually living but, sometimes, I am forced to wonder which omnipotent being I pissed off in my former life. I do not actually believe in God. That is where the spade first hit the ground; Quite a few people have told me since my diagnosis that prayer will save me…and I flip them off with my strong hand. But instead of turning to the almighty for some semblance of salvation, I have found my resolve in idolatrous demons of the flesh! Artistic demons. Artistic demons with notions of feminism, body inclusivity, and challenging the societal norms that find their basis in the modern church. Call me a heathen…but I have been saved by the wicked and insolent whims of a creative. I have an exciting history with photographer, Gabrielle Steberis.
When lock-down hit in 2020, we were both unemployed and I could walk. I was an Instagram-Karen, fighting the good fight against the modern patriarchy, one complaint at a time. And Gabrielle was up to her eyeballs in the backlash from her most controversial piece, Enchantress, which still is yet to remain on her feed for longer than 25 minutes.
It was a backlash that sold out her Etsy store and pushed her into viral territory of social media Artists, while also handing me my most popular Medium article to date.
As of the writing of this piece, I can only mobilise myself 20 meters at a time without a wheelchair while unleashing my unabated opinion online. And Gabrielle is supervising three studio spaces while juggling her freelance photography, and artistic career.
I have broken two strict commandments since lock-down. The first is biblical; Thou shalt not worship other gods. The second is meta; Do not meet freaks off the internet. Lord, strike me down, I will be a cockroach in another life because, when Covid began to shift into the daily norm, I took my terminal ass to Manchester to be photographed by one of the most endearing and enthusiastic creatives I have ever had the fortune of meeting.
I strongly believe that Gabrielle’s dynamic and confident approach to photography stems from her own personal ability to don her individual struggle with the poise of a royal wearing a crown. Alongside her advanced skillset, extensive travel kit (complete with your choice of nipple pasties), and inspired vision for storytelling throughout a shoot; she is the embodiment of empathy.
She laughs with you. She cries with you. By the end of a session, you feel as though you have given her something precious, as much as she has taken a shot of you.
The goal of this shoot was to learn to be less stubborn with my needs, and less rigid with my idea of physical beauty and my body as whole. My progressive deterioration in mobility is becoming more apparent and it is all too easy to wallow in the reality that, one day, I will be a sex void, pineapple with arms like toothpicks and a voice that sounds like a modem dial-up tone. It does not really make you want to…you know, live. But to be in a room with Gabrielle is to open a window to lost parts of the soul and physical form. She unlocks the door to undiscovered desires and qualities.
I began the shoot feeling limited and concerned with my delayed movements and what my body was going to be capable of doing.
“Can you put your foot there?” she asked.
I realised, then, how foreign my body of 33 years had become in such a short space of time: Could I put my foot there? Is my pee going to stay in? What if I bend one way and can’t bend back? Am I going to look like a squashed sausage between two heavy mattresses?
“I don’t know.”
With those words I admitted that, between the loss of my mobility and the crippling CPTSD from my physically abusive relationship in 2019, I had become tragically disconnected from my own physicality. That is intense to feel in the room with a stranger-come-personal hero. But Gabrielle’s warmth and understanding coaxed a change out of me with gentleness and kindness; this issue was not physical; it was mental. I would have to learn to ask.
“Pose me how you want me.”
“Can you help me take this bra off?”
“Shimmy me down the bed a little.”
What would have made for awful sex, made for a different kind of awakening in me and how I perceive my physical intimacy.
“Could you wave your legs a bit…” she said. I glanced at my paralysed left leg. “Oh shit…”
Through Gabrielle I have become increasingly aware of the deceptive strength in vulnerability. My old relationship trained me to think that true power lay in a lonely and isolated stoicism. But in the creative-nirvana of the Goddess Steberis, there is a specific might in her openness that leads to a nuanced dual-liability in creation.
I stand (in a manner of speaking) reborn. And I feel that the only intention I wish to carry forth into this incarnation of myself is to be contrarywise to the person I was before. I will be loud, vulnerable, gay, colourful, and even a little bit naked. In honour of my Lord and Saviour, Gabrielle! All photographs contained within this piece are produced, edited, and credited entirely to Gabrielle Steberis.