‘Narcolepsy isn’t funny’ – living with a sleep disorder
For a serious examination of the devastating and incurable disability that is narcolepsy, Henry Nicholls’s book, Sleepy Head, is a surprisingly funny account.
There is the obvious, if somewhat cruel, humour to be found in stories of people falling asleep in surprising places: in a small boat sailing around the Farne Islands, with the freezing North Sea cascading over the gunwale; while scuba diving; on a rollercoaster; at the dentist’s; on the back of a horse; on a surfboard. But there are other extremely funny insights that Nicholls gives into the crepuscular world that narcoleptics inhabit: his laconic fretting over the etiquette of attending a CBT group for insomniacs, which he discovers he also suffers from while researching the book. “A narcoleptic attending an insomnia clinic could be seen as the height of insensitivity,” he deadpans. Then there’s the attempt to solve sleep apnoea by learning the didgeridoo. (Didgetherapy, since you ask. It involves acrylic didgeridoos and is, apparently, quite effective.)
Misjudging his tone entirely, I arrive at our interview expecting a garrulous chat. I’m particularly excited that I opened Nicholls’s book thinking I was pretty special to be able to share with him the fact that my father also had narcolepsy – and close his book having realised that five of my closest family members (including myself) have had diagnosable sleep disorders ranging from sleep apnoea to night terrors to – my own thrilling self-realisation – an episode of hypnagogic hallucination and sleep paralysis.
Nicholls has suffered narcolepsy for 20 years. As well as the insomnia, he also has excessive daytime sleepiness, sleep paralysis and hypnagogia, and cataplexy – in which intense emotion causes all the muscles around the body to cut out for anything from a few seconds to a minute or so. To outsiders, it looks as if the sufferer has suddenly fallen asleep. In fact, they are fully conscious. Despite his multiple disabilities, Nicholls – a science journalist and author – considers himself one of the fortunate ones. During his PhD, spent studying sand martins on the Tisza river in central Europe, he found his narcolepsy fitted in quite well with his long waits for the birds to return to their colonies. “Although I did find myself motoring into the tangled banks,” he admits.