Our days at home fall quickly into a routine. Visitors from England come and go, staying with us in the house, chipping in with the cooking and helping to manoeuvre me in my giant green sling.
During the peak we have two friends from England and their baby in our master bedroom, another friend from Tonga in our office, mum in one spare room, Mat in the other, and me on the hospital bed in the living room, so things are busy, and I am glad of the distraction. I am also glad we moved out of our one bed apartment in San Francisco a month before the accident(!)
Mum wakes me every morning with the radio and a medley of pills.
“Look at the mess you’ve made”, she says of my pillow fort and ruffled sheets, straightening them out and making me comfortable as best she can.
Mat fills my padded bottle with juice, stabs me with an injection and kisses me goodbye as he leaves for work. Mum cares for my wounds and empties various things, before we spend the day reading, chatting, napping and dealing with admin. We tango with social workers; navigate the labyrinth of disability pay; schedule and move outpatient appointments and attempt to arrange transport for said appointments; sparring with bureaucracy and incompetence at every turn.
In the afternoon mum builds me a tower of pillows behind my head to block the over enthusiastic summer sun from cooking me alive. Every so often my home nurse Jessie visits to check up on me, and sometimes a social worker will pop in and treat us to another fresh helping of bureaucracy and incompetence.
When Mat gets home from work, I am hoisted into my wheelchair and walked up and down the corridor outside of our front door. Every day without fail Mat runs down the corridor and breaks at the last minute before I go flying down the stairs, and every day, without fail, I believe he isn’t going to stop.
The front door is opened so I can feel the air move on my face and watch the people go by, then I am wheeled in for dinner up at the table with Mat, Mum and any guests we have in town, treating them all to a symphony of uncontrollable farts that reverberate from the hole in my tummy.
I retire to bed while the others play board games at the table, trying to involve me where they can, but I still feel left out. I just don’t have the energy to keep up. I remind myself that this is temporary and pass the time by studying the lines of plaster in the ceiling. I’m now a bit of a ceiling connoisseur.
Before bed, I listen to my very own podcast sent to me daily by a friend back home. Full of updates on his life, musings, topics to mull over, readings and poetry, it comes every day, without fail, and regardless of how busy his life is. An anchor in time and something to distract me from myself, I am humbled by his kindness and cannot begin to comprehend it. I listen with my noise cancelling headphones, spit toothpaste into a yellow tub, secure my eye mask, take my pills, close my eyes and wait for it all to start over again.
The days merge into one, punctuated by a constant flow of day time visitors; family and friends who draw me pictures and bring me flowers and colleagues who come dressed as unicorns, bearing baskets full of gifts. For some reason most of my gifts are unicorn themed, I have no idea why, but the spread of misinformation makes me laugh. I guess I have to accept that unicorns are my thing now.
Some of the guests cry when they see me, which confuses me, before I remember I have lost about 30 pounds, am lying in a hospital bed, and haven’t washed my hair for two months, so I probably don’t look my best.
I’ve also gotten a bit lackadaisical about the whole clothing thing. It’s not possible for me to wear much on my bottom half because of my catheter, and I get so hot during the day that it’s not a rare occurrence for me to cast everything off and lie there completely naked. I do try and wait for the guests to leave before I do this though. I’m not an animal.
This afternoon is one such occasion. I am so hot and grumpy that I’ve just thrown all the sheets on the floor and my gown is ruffled up so it only covers my top half.
Mat stops in front of my bed and stares between my legs, for longer than is appropriate, cocking his head slightly to the side.
“Does it look different to you?” he says to mum as she passes.
Mum stops in her tracks, joins the stare and cocks her head the other way.
“Hmmm…” she pontificates. “Problem is Mat, I haven’t seen it for years”. There is a pause. “Do you remember what it looked like before?”