Patient casebook: Shielding superstar
I received worldwide recognition without even needing to leave the house Stephanie Castelete-Tyrrell, 26, Northampton
On first hearing of COVID-19, I’d no idea how monumentally it’d affect me. In February 2020, I left my buzzing uni life in Bristol, and my hubby and I moved back in with my mum and two brothers in Northampton.
You see, I was extremely clinically vulnerable.
I have congenital muscular dystrophy, a life-limiting musclewastage condition that causes respiratory problems as well.
You must shield, a letter warned me.
Then, that March, we went into lockdown.
My grandad moved in, too, and as COVID-19 closed in, we didn’t set foot outdoors.
‘I want to document this,’ I said to my family one day.
‘Just us at home?’ they asked. That was exactly it.
I wanted to put a spotlight on the struggles endured by the shielding disabled community – being high-risk, our services shutting down.
I was a keen camerawoman, had graduated with a BA, then MA in Film Studies.
I’d been inspired by the director James Lebrecht, whose documentary Crip Camp featured an all-disabled cast and crew.
But there was still a long way to go to diversify the film and TV industry. So my family agreed for me to film our day-to-day lives with the camera attached to my wheelchair.
I spoke on camera about my fears of COVID-19 and the feeling of being forgotten by society. I captured our lowest days. ‘There have been hundreds of deaths,’ my mum told us, scrolling glumly through the news.
But there were special times we shared on camera, too – birthdays, video calls with friends.
From March until August, not one of us left the house.
During that time, my documentary Living in Fear was created.
I pulled the clips together, edited them and, in July last year, released it through my company Four Wheel Drive Productions.
‘It’s amazing!’ friends said over video call.
I had many pals in the disabled community also living in fear of COVID-19.
Word spread about my lockdown documentary, and soon, Living in Fear was recognised worldwide.
I won 12 awards and was selected for Pinewood Studio’s prestigious London Lift-Off
Film Festival!
I won Best Feature Documentary at the LA Sun Film Fest and Best Inspirational Film at the Hollywood Gold Awards.
‘I can’t believe it!’ I beamed as my family sat around my computer.
‘You’ve done so well,’ Mum smiled.
Since February 2020, I’ve left the house five times – but only for hospital appointments.
I’m waiting for my second vaccine dose and hope that freedom follows. But it’ll take a while before I’m confident enough to return to my old life.
Despite my isolation, I’m proud of everything I’ve achieved.
Now I’m preparing for my next documentary, and writing scripts for dramas, too.
I just hope Living in Fear has opened viewers’ eyes to what life is like for the disabled community.
I wanted to put a spotlight on our struggles