The equipment arrives at our home on my final evening in Vacaville and Mat sends me a picture of it, all set up and waiting for me. It’s hard to imagine myself in that fragile looking bed, without all of these wires, the hustle of nurses streaming past my door, and the beeping.
I lie awake and stare at the ceiling. Excited, apprehensive, but mainly boiling fucking hot. Distracting myself by squinting at Footloose on the small hospital TV, I hold a fan at the hole in my neck brace as sweat drips down inside it. I fight the urge to rip it all off all off; the wires, the neck brace, the boots, the bags. I want to throw all of the pillows that keep me propped in corpse pose onto the floor and curl up in a ball on my side.
I make it through the night without succumbing to my inner Elephant Man, and am woken by the joyful morning sensation of a nurse changing my catheter. I contort my face, bite the inside of my cheek and thank her profusely when it’s all over like the good Brit I am.
Shortly after Mum shuffles into the room, arms laden with spoils from the pharmacy: stool softeners, laxatives, vitamins, narcotics, nerve pain drugs, sleeping drugs, anti-anxiety drugs, woundcare dressings, ointments, boxes of blood thinning injections, wedges to turn me, night boots to help with my foot drop, colostomy supplies, catheter supplies. The nurse hands her a timetable of when everything needs to be administered and I see her eyes widen. Sensing my eyes on her she catches herself, takes a deep breath, looks up at me, and smiles.
“Are you ready Luce?”
“I think so”.
I arrive in the dusk. Pulling up outside of our converted church, I recognise the smell of leaves and warm tarmac as I am carried out of the ambulance on a gurney. Gently lifting me up the twelve steps to the entrance, I am eased into the imposing hospital bed that now inhabits our living room, nestled-in between the piano and the couch.
Staring up at the 20-foot ceiling, the relief of being back in my own home is overshadowed by an acute awareness of how real this suddenly is. I am out of the hospital bubble – a hiatus in time that should have ended when I left – and back in the real world, in my real life, in my real house. But the chapter is not over, and things are far from normal. I am not the same person I was before. I am a floating head now, trapped in a body that responds to my requests with either numbness or pain. I am placid and out of control, a shadow of my former self, rocking unpredictably between drowsiness, elation and frustration.
Mat gives me my injection, mum administers a cocktail of drugs and offers me a Virgin Atlantic eye mask to mask the streetlights flooding through our curtain-less windows.
I listen for the onslaught of beeping, but sleep comes in its stead.
I wake in the night in pain, needing to be turned, but don’t want to wake anyone up. I wait for an hour, until the pain becomes too much and I have no choice but to call for relief.
Within seconds, Mat emerges, rubbing his eyes, from the downstairs room he is camping out in. He turns me over, props me with the wedges, passes me some Oxycodone, a drink with a straw and kisses me on the forehead.
I wake with the sun at 5am and wait for the house to stir.
“Alexa, play BBC Radio 2,” Mum rises soon after.
“What do you want for breakfast Luce?”
The honest answer is, nothing. I can’t remember the last time I was hungry and for some reason I haven’t been able to enjoy food at all since this craziness began.
“Crumpets?” she smiles, hopefully.
“Ooo. Yes please mum”.