Not long afterward, a doctor suggested Aaron take a sleep test. Out cold, with dozens of electrodes attached to his skull, he passed this exam with flying colors: Aaron had narcolepsy, said the doctor, a rare neurological sleep dis-order for which there is no cure.
Two years ago, Aaron, his younger sister and I moved back to the United States, to Seattle, to be closer to specialists and find a school for him. My husband did not come with us. For a while, on a regimen of amphetamines, Aaron was almost a normal boy. He was doing well in his classes. His body no longer craved sleep, and the headaches disappeared as mysteriously as they had arrived.
Without warning, he began needing sleep again. First, he slept for a week at a time. Then for two weeks. I had to let his teachers know that when he did make it to school, despite the bloodshot eyes and dozing in class, he was not stoned. (If only he were!) Eventually, he was sleeping so long that by the time he would wake up, the school day was over.
The bear is back.
Once again he is curled in the fetal position. I jostle him awake to take a bit of food and swallow his pills. Despite the amphetamine blast, he falls right back to sleep. Some days he is awake for several hours, but the headaches make him wish he weren’t; other days he barely leaves his bed. I am home with Aaron when a letter arrives from his public school. He has been officially removed from the rolls. Never have we been more alone.
Aaron’s neurologists tell me the diagnosis of narcolepsy appears to have been wrong. Several suspect Kleine-Levin syndrome (KLS), known as the Sleeping Beauty disorder. It is poorly nicknamed, as it primarily strikes teenage boys, not girls. KLS researchers are fairly certain that the hypothalamus, which controls sleep and other impulses, is out of whack. Sufferers also have bizarre food cravings and binge in the middle of the night, which would explain the empty Doritos bags and jars of Nutella, Aaron’s chip dip of choice, under his bed. With only a few hundred known KLS sufferers in the world, Aaron’s doctors have never seen a case and want to run more tests. But there is no cure, not even any treatment.
I once believed a deep sleep was heaven sent. Yet when Aaron is in one of his fairy-tale slumbers, it is more like a sleeping death. He has eaten the poison apple, pricked his finger on the spinning wheel or, more likely, inherited a DNA train wreck.
It is hard to imagine how he will finish high school. Who would ever hire him? And unlike Snow White in her glass coffin, which Prince Charming just happened to stumble upon, how is he supposed to meet his true love if he never leaves his room?
What I do know is that the world will not wait for Aaron. The doctors tell me that if he does have Kleine-Levin syndrome, he may outgrow his symptoms in eight to 10 years. But a decade is a long time in a child’s life. Ten years ago, there was no Facebook. No tweets. No iPhone or iPads. If he wakes up at 25, how much will he have missed? Can he just pick up where he left off—an eighth grader who can grow a full beard?
So this is how I love him: I yell, I prod, I poke. I drag the bedcovers off and open the blinds. I want to be his worst nightmare. It’s fine if he hates me. I flick the lights on and off and shake him again. So deep in sleep, Aaron at first doesn’t even stir. He is adrift on an ocean I can’t name. I am pulling him back in to me. I have a rope, and I am hauling him ashore as he tries to float away. And I will never let go.
Editor’s note: Aaron was recently accepted into the Undiagnosed Diseases Program at the National Institutes of Health. He is now on a drug that researchers believe makes patients less receptive to the brain chemical that is responsible for sedation. Aaron is sleeping less and is working to return to school part time.
MARTHA ANN OVERLAND is a journalist and public health editor who lives in Seattle with her teenage son and daughter.
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