My son has several theories as to why doctors always take so much of his blood. He favors the explanation that they are selling it. And he thinks that if they are going to take nine vials at a time, he should get a cut of the money.
“That seems fair,” I said as we walked out of the children’s hospital, past the kids parked in wheelchairs and the toddlers with blank stares cradled in their parents’ arms. “But if that is true, why did they want your urine?”
“That threw me, too,” he said, theatrically dropping his voice to a whisper. “Those doctors are sick.”
But those doctors are not sick. My son is.
It seems that Aaron has always had a headache. Even when he was six years old, his head hurt. The pain would last a few days, which over time became weeks, then months. When the headaches got worse, he stopped eating. By the time he was a teenager, the pain was so bad, he was frequently hospitalized.
For much of Aaron’s life, we lived in Asia, where my now ex-husband and I worked as journalists. So this is where we started our medical journey. Doctors in Bangkok injected Aaron with a metallic dye and scanned his brain. Technicians in Singapore attached wires to his head and his heart. Traditional Vietnamese doctors used acupuncture and fire cupping to open his meridians. During frequent trips back to see specialists in America, they took more blood.
Aaron stoically endured each medical test, even the spinal tap. He asked for only one thing. Sleep. If I would promise he could go back to bed, Aaron would stick out his arm, let the nurse tighten the strap and wait for the needle.
Each doctor had a different diagnosis—from stress to migraines to autoimmune disorders—depending on whether the specialist was a psychiatrist, a neurologist or an immunologist. We left each visit with sacks of uppers and downers, vessel dilators and channel blockers, antibiotics and steroids. I believed that every new diagnosis and every new pill held the answer, if not the cure.
They never did.
Often the medicines made him worse. One night in our house in Hanoi, when Aaron was 14, I found him splayed out on the stairs. I had given him several new medications before putting him to bed. Now he couldn’t remember how to use his arms and legs, which he thought was terribly funny.
Aaron told me he saw blue elephants, marching in pairs out of the light. “Don’t you see them?” he asked, pointing. “They are so pretty.” Then he opened his mouth wide. “Uk ma, I ca swa ma ton!” he said, laughing. (Look, Mom, I can swallow my tongue!) A moment later, he was gagging and terrified. He believed he really had swallowed his tongue.
I was just as terrified, and I tried to get him to vomit the pills. Then I typed the name of the newest medication into Google. Apparently, to “quiet” his cerebral cortex, the neurologist in Bangkok had prescribed Rohypnol, the so-called date rape drug banned in the United States. I had roofied my own son.
Not all medicines were useless, however. There were nights when the headaches were so bad that Aaron would wake and go wandering. Sometimes it was like having a newborn baby nearly the size of a grown man. I was sleeping only a few hours each night. Just as I would get him back to bed, the neighbor’s dogs would start barking. Their miserable cries set off mine. My curses out the window, in Vietnamese and English, soon had the rest of the neighborhood creatures yowling. So in my nightgown I climbed onto a garden chair and aimed well, flinging meatballs stuffed with Aaron’s Valium over the fence. I was a wild-eyed American in her bathrobe, bringing peace to a Vietnamese neighborhood, one pill at a time.
On bad mornings, nothing could wake him. I thought the same thing you are thinking. What kid doesn’t say he’s too tired to go to school? So I tried tough love. Mornings became a battle. On days he made it to school, Aaron fell asleep in class and snored through his exams, which humiliated him. The international school in Hanoi said it had a waiting list of normal children and made clear that it could do better. Aaron curled up into a ball and entered adolescence as a bear cub in hibernation.
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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