Ask Andre Royal about narcolepsy and you can typically expect an animated, far-reaching response.
“One, it’s a rare disease. ” Royal says, “Two, a lot of people can relate to it, but it’s not a very popular theme. There’s a lot of machismo associated with the disease, a lot of ‘I’ll sleep when I’m dead!’ sentiment. But fact is, there are a lot of people suffering.”
Given his familiarity and zeal about the topic, it’s both surprising (but not really) to learn that Royal’s personal life has been much about the matters under discussion. He was diagnosed with narcolepsy several years ago after multiple episodes of “falling asleep on my feet.” The diagnosis launched a profoundly difficult reaction in the aspiring chef. Finding no belief or relief in the diagnosis, he slid into a prolonged period of denial. Depression consumed him. Medications failed him. He stopped driving, bounced between jobs, and struggled with homelessness and family problems.
And yet, Royal’s personal crisis eventually led to him to establish a local nonprofit sleeping disorders advocacy group. His effort, he says, was inspired by hopes of forcing effective personal change in his life. He named the organization Suddenly Sleepy.
That was three years ago. Suddenly Sleepy has since endured pandemic-related obstacles and frustratingly slow recruitment of advocates. Still, enough pieces have come together that Royal is confident Suddenly Sleepy is ready to take off.
Not coincidently, one of the launch pieces is Royal’s recent publication of a pair of illustrated children’s books. One of the books, Little Big Bear, tells the story of a young bruin whose life changes dramatically when he unexpectedly falls asleep playing hide and seek and starts to dream that will eventually get him caught in the game. It’s an entertaining, instructive, and barely (bearly?)
The book’s been a door opener to discussions with community members about plans for Suddenly Sleepy. It has been embraced by child educators as a tool that can be folded into school curriculum and classroom instruction. It has facilitated parent/child discussions. In Royal’s view, Little Big Bear has unexplored potential as one of many creative strategies suited to building healthy awareness of sleep issues across communities.
