I was five years old when I fell in love with cinema. We were watching Pinocchio in an old theatre, crowded and noisy with parents and kids. I had a Heart ice-cream clenched in one hand – a grown-up’s ice-cream, a special treat. As the story unfolded, I felt sad, then scared, happy. So many feelings! The emotions were hard, and also thrilling. It was magical.
I was an aspiring film-maker in the early 90s when I first attended Sydney film festival. Initially, it was just one more thing to wedge into the chaos of my life. End-of-semester deadlines were looming and sometimes I’d dash to a session, then rush back to uni to edit a film. But I loved it – being in a crowd of fellow cinephiles, the applause at the end of films, the excitement of discovery. Days spent throwing off your life, forgetting everything and seeing the world through different eyes.
I was hooked. It was the beginning of an annual ritual, which continued at the Melbourne international film festival after I made Melbourne home.
My short films travelled to festivals around the world and I followed them to Germany and Bulgaria. In Sofia, I stood on stage with an interpreter, a fascination all the way from Australia. After the screening, a young man approached me outside the cinema and said, “Your film. It … ” He searched for the English words, then made a fist and pressed it to his heart.
I gave up the film-making dream. I loved the ideas and writing, and weaving it all together in post-production, but shoots were fraught for an introvert with social anxiety. It was like a bad dream where I’m naked in public with nowhere to hide while people keep asking for directions. I didn’t want to spend my life facing my fears.
The annual festival chaos continued. If I left my office job early, I could squeeze in three films in one night, rushing between venues.
Then 16 years ago I was forced to slow down. I started experiencing crushing fatigue and constant viruses. I’d wake up each morning exhausted and in pain, like I’d run a marathon in my sleep. My legs felt like I was wading through honey. Sometimes I had trouble following conversations and instructions or absorbing what I read.
Eventually I was diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and turned to face unrelenting indifference and disbelief. It’s a serious condition – 25% of patients are housebound or bedbound – but there’s so much stigma and dismissal.
People only see you at your best, or not at all. I was scared and alone, desperately trying to hang on to my life. Some days it took more courage and determination to get out of bed than anything I’ve ever done. But pushing and pretending just made me worse.
One by one, I lost pieces of my identity. Running, swimming laps, riding my bike, reading books. Friendships, travel, career. The idea of having children. I felt as though I was disappearing. I wasn’t prepared to give up the film festival – I wrestled with punishing train trips and unpredictable symptoms, the frustration of tickets purchased and wasted.
My health improved and I regained some pieces, but then it went backwards and I had to release them all over again. I sank into depression when I lost the hope of recovery, but eventually grief gave way to acceptance. It wasn’t giving up; it was learning to live this new life instead of fighting it. Making a space for hope but not letting it strangle me.
I started a new festival tradition. Each year I book a room in the city during Melbourne international film festival and spend five days just watching films. There’s no exhausting travel and I have somewhere to lie down and rest between sessions.
I arm myself with a walking stick, compression tights, ibuprofen and electrolytes. Some years I emerge braindead, wrung out and triumphant, while others are spent lying in my room, too sick to leave. MIFFcation has taught me some important things: priority queueing makes MIFF membership essential; two sessions in a row is a risky move; never book non-refundable accommodation deals. And there’s always next year.
In the slow, painful process of reinvention, the film festival is like a clenched fist, a connection to my old self. And I’m not letting go.
I met my partner when I was 43. I’d given up on the idea of love and here she was. It was festival time and we sat in the dark watching films, not touching. Our feelings seemed to float in the space around us. We knew. But to speak them out loud might break the spell, so there they hung, suspended on invisible threads of tension and possibility. One night we found ourselves trapped in the festival lounge, unable to move away from each other. We skipped our film and went to a bar where we had our first kiss.
After all these years, the grief still visits. It comes in waves, knocking me down and pulling me under, and then I surface. It’s not a life I’d choose, but how could I unwind the things it has brought me? Love, friendships, community and the insights and perspective of viewing life through a different lens.
The film festival has become a kind of ritual of gratitude. When the lights go down in the cinema at my first session, I’m so happy to be there. I think of people with ME/CFS who are too sick to leave their homes and beds, whose lives have shrunk to the size of a room. I count my blessings and acknowledge my losses. I let myself cry.
In that moment, I’m the five-year-old clutching an ice-cream, the film student rushing from cinema to editing suite, and the woman with the bruised heart and failing body falling in love.
I’m still me. I’m still here. Let the magic begin.
• Kerrie McCure is a writer, editor and photographer living in Melbourne
