As I pondered what to write for the October’s e-news, I watched tethers connect childhood memories of Halloween with my current project on Cataplexy and Choreographic Processes.

While growing up in New Orleans, Louisiana, USA back in the 70s and 80s, October was my favourite month. Days got shorter, nights got longer and the temperature cooled. And on the last day of the month was my favourite holiday, Halloween. I have fond memories of decorating the house and figuring out my costume. Trick or treating with family and friends around our neighbourhood, buzzing with a mixture of frights and giggling sugar highs.

For me, Halloween marked the end of summer and beginning of winter holidays. It was a community celebration of transitioning from life to death. A time when the space between worlds was thin and crossable. Where disguising yourself was not only a way to face, blend in and protect yourself from the unknown but also a way to embody and inhabit the other side.

Within Narcolepsy (a neurological sleep disorder) the space between sleep and awake is thin and fluid. At times I am alive and awake and others, dead asleep. But often, elements of one world slips into the other; my body falls asleep and my mind is awake. If I’m awake, then it’s cataplexy. If I’m waking it up, it’s sleep paralysis. However, often my mind and body are neither asleep nor awake. It’s like being in the transitional spectrum of twilight, when light and darkness, awake and sleep, life and death, change places. It can be terrifying and/or blissful; kind of like Every Day is Halloween.

Critical Path’s residency had been a time for me to explore Cataplexy and face my fears of the unknown with support and creativity. It was a safe space to let others observe my cataleptic episodes. To take the material that comes out of using choreographic practices during my episodes back into a dance space. To explore the ebb and flow nuances of my twilight world. To return to cataplexy while my body is awake. Like putting on a costume, I could be creative with its representation and repeat qualities of those lived experiences so they became more familiar, less scary. To navigate the fluid relationships of mind/body, language/thought/feeling, memory/being, person/object and fight/surrender. And the Sharing supported the need to figure out how to communicate my Cataplexy story through dance, dance bungees, text (storytelling, visual description and audio description), lighting, music and audience engagement in a hybrid (onsite and online) and accessible format.

Narcoleptics have special skeleton keys to unlock the complex relationships and mechanisms of sleep/awake. There isn’t much research on dance and narcolepsy. One scientific article and my dance research residency are great, but we need more! Research shows that Narcoleptics tended to be a creative bunch because of our fluid access to sleep/awake states. I would also add it’s due to our management of a multitude of difficulties from our bodies, from normative society expectations of deadlines and productivity and from medical science and government’s lack of interest in research and support.

We have a day of awareness (World Narcolepsy Day: 22 Sep). But it would be nice to celebrate the relationship of sleep and awake. To embrace those who experience Narcolepsy and others with sleep issues. To acknowledge that like dying and death, those with Narcolepsy navigate a currently uncurable disease and major disruptions of their lives. And as Covid showed many people, we need to recognise and confront negative attitudes towards sleep, rest and pacing and rejoice in the benefits of changing one’s lifestyles and priorities. Those of us with Narcolepsy have amazing things to share with you. Come find us!