A few years ago, I made a throw-away comment. “The Narcolepsy UK annual conference is easily my favourite weekend of the year.” When the words left my lips, I’m not sure I really meant them, but I have come to realise that this statement true. In spite of the active, interesting and fulfilled life I am lucky enough to lead, the thrill I feel in the run-up to the Narcolepsy UK annual meeting is special.
I developed narcolepsy and cataplexy when I was 21, more than half my lifetime ago. I was fortunate to get a diagnosis relatively quickly, within two years of onset. With medication, I imagined I had my narcolepsy under control. I did not want it to define me. I could not see much point in meeting up with others with narcolepsy. I muddled on alone.
Then, in 2011, I saw that the world-authority on narcolepsy – Emmanuel Mignot – was to be the guest speaker at that year’s annual meeting in Cambridge. I signed up, but in my capacity as a science journalist intending to report on his work rather than as a person with narcolepsy. It was an honour to hear Professor Mignot’s talk and interview him over lunch, but it was the other conversations I had that day that really surprised me. I remember everyone with narcolepsy I met and talked to at that conference and many of the details of our conversations. Since then, I have attended every annual meeting in search of the magic that happens before, between and after sessions.
Standing in a coffee queue where everyone else has narcolepsy is strangely emboldening. I want to talk; I want to tell; I want to share; I want to learn; I want to help. As narcolepsy does not discriminate, the demographics of a Narcolepsy UK conference are naturally diverse, yet in this setting differences in age, ethnicity, gender, background or faith are wholly irrelevant. There is always common ground, on the bewildering route to diagnosis, the unpredictability of medication, the battle with memory and the contempt that society holds for the habitually sleepy. Very often there is good humour and laughter. Occasionally, the hilarity will trigger cataplexy, but in this understanding environment, these attacks have an uninhibited, shimmering purity that is a joy to both experience and behold. Even the conversations suffused with sadness, tears and anger at the irreversible neurological damage can be uplifting.
In almost ten years of attending Narcolepsy UK’s annual conference, I have spoken to hundreds of people with narcolepsy and their families, and all of them was upbeat (with the exception of one peculiar experience). I cannot think of any other setting I have ever been in or ever will be in that could come even close to this near 100% hit-rate. With every year, it gets better too as it comes to feel more and more like a reunion, a joyous get-together for friends old and new.
Once upon a time, I wanted to keep narcolepsy and people with narcolepsy at a distance. My involvement with Narcolepsy UK changed all that and the annual meeting in particular. It’s the one weekend where I know am definitely me.
For more information on narcolepsy, visit Narcolepsy UK.