Tori Hobbs
Listen to the audio version of this piece
For a long time, my bedside was all I knew. Everyday as a child, I’d stand with my hands on my hips, examining each inch of my world. Corner by corner, surface by surface. I’d meticulously wipe and scrub every spot clean. A ritual I’d complete when it felt like too much to bear. I’d let the ringing in my ears build, as if it was filling the whole room, the outside noise wouldn’t dare to creep in. I’d create a fortress in my bedroom, lovingly arranged and rearranged. And then I’d tear it all down and re-built it from the foundations up, all over again. Every time I created this new world, I’d notice the heat on my face melting away, turning itself into a blanket to envelope me. The ringing in my ears fizzled out, quietening itself. Some days the world beyond my bedside didn’t exist.
Disability forced me to become intimately acquainted with my bedside in a way I’d never been before. My bedside became all I knew. The glitter lamp I’d inherited from my childhood bedroom, its books, snow globes, frames and toys were still lovingly arranged, nearly a thousand kilometres away from where they’d once been.
Over the following months, I’d study the texturing of our unit’s popcorn ceiling. Corner by corner, surface by surface. The imperfections burned into my brain. The smell of the mould on our window frame, the flaky, peeling paint on the wooden windowsill. The familiar feeling of anxiety would return except this time, with no energy to quieten it. My bedroom, once neat and organised, would become a mess of empty foil pill cartridges. Half drunk cups of sparkling water. The previous night’s discarded hot water bottle. Snotty tissues. Self help books. Machines and creams.
The world that had once been so open to me was forced closed, and I endeavoured to enter it in a different way. I sought a new world through my phone, I trawled through every app I had, seeking the community that I knew was out there, that I knew was waiting. I carved out a space where I could create those impenetrable bonds. The digital world became my primary form of community. One of the first places I would go for comfort. My phone was a conduit, an invisible bridge connecting two worlds.
From my bedside, I’ve seen the cycle of grief, pain and punishment that has followed me throughout my life. I’ve also been lucky enough to create and enter new worlds from between heat packs, fuzzy blankets and faded sheets. From my bedside, I step into a world built on the foundations of empathy and care. Unconditional love and understanding. One where you’re respected and embraced, regardless of who you are and what you do with the life you’re given. From my bedside I am able to enter a world where every inch of me is wholly accepted. Where there are people who are willing to sit with me, to hold me, to help me find solace and safety in this world I’ve created. To help me tear it down and rebuild. Corner by corner, surface by surface.
