Remember the sleepy blonde in Deuce Bigalow, Male Gigolo? She conked out while bowling, landing prostrate in the lane while her ball rolled on to make a strike. If you laughed at that scene, here’s a funny story for you. I had the opportunity to attend the 22nd Annual Narcolepsy Network Conference in San Diego a few weeks ago. I was invited to read from my new novel, Aberrations. When I began writing the book ten years ago, I suspected narcolepsy would be a fantastic vehicle for character development. By the time I completed the work, I realized the book was a fantastic vehicle to support narcolepsy awareness.
The condition is highly misunderstood and Hollywood hasn’t helped. At least twenty people in San Diego mentioned Deuce Bigalow as their example of how the media and general public perceive them. Some are saddened and some are outraged. In many cases, it kept them from recognizing their condition amidst constant criticism of laziness, avoidance behaviors, and forgetfulness. We all try to have a good sense of humor and so do they. In fact, they gathered for drinks on Saturday night to do skits and poke fun at themselves. But they deal with the effects of excessive daytime sleepiness, cataplexy, hallucinations, and forgetfulness day after day while Hollywood gives the rest of us a few big laughs from time to time. The federal government says that 200,000 Americans suffer from narcolepsy but the folks I spent the weekend with know that the numbers are closer to 1 in 2,000, many undiagnosed.
And what amazing people they are. I met a woman in her sixties who, after a New York theater and modeling career, began medical school at age forty. She’s now a respected Psychiatrist in Greenwich Village. I met Tim Costa, pro Bass Angler, who is committed to a personal awareness campaign. Fellow narcoleptics sat spellbound as he described how constant sleepiness and cataplexy nearly wrecked his marriage and derailed his career. After nearly two difficult years of searching for answers, his life took a positive turn once properly diagnosed and treated. I also met college students struggling to build relationships and stay awake for their education, knowing it’s critical to their future. The number of people who said their general practitioners knew nothing about the condition surprised me. These folks were put through months and sometimes years of unnecessary tests before landing in the sleep specialist’s office.
On my way to fiery San Diego, sitting in a nearly empty airplane, I thought the news of the day would be burning down homes. Instead I found burning down people. I heard story after story of perceived laziness and procrastination, poor school performance, marital collapse, and downright meanness. Many had overcome but some appeared to be barely holding on, so happy to spend one short weekend with people who understood. People who won’t stare if they fall to the ground in a heap, call 911 unnecessarily, or pass judgment if they fall asleep during the keynote address.
Last summer my mother visited from Texas. She looked around and said, “You know, you live in a perfect world here.” We were at the soccer field watching my eight year old practice. It was a beautiful day in the Philly suburbs, breezy and clear. I thought, Yes, I’ve really landed on my feet. This month I’ve had the opportunity to travel to Boston, Shreveport, Louisiana, and San Diego. I’ve seen and heard about disturbing racial issues I thought had been resolved, global-warming temperatures, and smoke overhanging one of the most beautiful cities in the country. In the suburbs, we sometimes believe that all is right with the world. Of course, we have the day-to-day ups and downs of married life, busy schedules, typical teenagers, and the occasional industry reorgs and lays offs that shake us up. But by global standards, our world is as close to perfect as some folks find. It’s easy to forget our personal call to make a difference, however small an action it may be. This month I’ve been reminded that the world isn’t perfect and that I still live in it. I hope my novel will help make a difference.