SEIZED BY NUMBNESS
The following is an excerpt from the memoir, Chasing the Merry-Go-Round: Holding on to Hope & Home When the World Moves Too Fast, by Kelly Bargabos.
Narcolepsy snuck into Bobby’s life when we weren’t looking; in fact, we barely noticed at first. It started when Bobby was twenty-six or so, living at the leaning house on Walnut Street and working at the casino. When he first told me about his legs giving out at work, causing him to fall to the ground, his tray of drinks spilling on his uniform, and his glasses breaking as they hit the floor, I didn’t think too much of it. And then it happened again. And then I witnessed it. I was with Bobby in my mother’s kitchen and we were laughing. I don’t remember what was so funny, but Bobby was laughing pretty hard. His legs crumpled suddenly, and he fell with all his weight against the dryer. That’s when I knew something was happening in his body. When I began to research the symptom of one’s legs losing strength, I had no idea where to start. I typed the expression “legs give out when laughing” in the search window and discovered a name for what Bobby had been experiencing: cataplexy. I kept reading and learned that cataplexy is often a symptom of narcolepsy.
Narcolepsy is a chronic neurological disorder caused by the brain’s inability to regulate sleep-wake cycles, resulting in the overwhelming urge to sleep. Excessive daytime sleepiness (EDS) is the major symptom that characterizes narcolepsy.
Anytime Bobby was still for more than a minute or two, he fell asleep. When Bobby got in my car, he fell asleep before I turned the corner. I wouldn’t let him have a drink in my car after a cup of coffee dropped out of his hand when he dozed off and spilled all over the carpet and seat. He fell asleep while eating at the dinner table, his face landing in his plate of food. He fell asleep in the middle of a conversation. He even fell asleep while sitting on the toilet.
Cataplexy is the most common major symptom of narcolepsy other than EDS, occurring in about 70 percent of narcolepsy patients. The person can experience sudden loss of muscle tone leading to feelings of weakness and a loss of voluntary muscle control, which means that Bobby can be standing still or walking or sitting in a chair and then suddenly fall over. All 225 pounds of him can suddenly become lifeless, and he is unable to move until his legs regain their strength. He doesn’t lose consciousness during these episodes, but he can’t speak and he can’t stop it once it starts. He has to wait it out. Cataplexy can occur spontaneously and can be triggered by sudden, strong emotions such as fear, anger, stress, excitement, or laughter. It seems to happen often when Bobby least expects it. After dinner one night, he was putting his pan of leftover shepherd’s pie in the refrigerator. The pan was still warm with his favorite comfort food—mashed potatoes, peas, beef, and gravy—that our Mom used to make for us when we were young. As Bobby bent over to find room on the middle shelf, he fell hard into the metal microwave rack next to his refrigerator and gouged a wound in his side and stomach. When I saw him a few days later, there was a deep, purple gash from his chest to his waist.
As I learned more about narcolepsy, I passed the information on to the rest of my family. Some of the things we had been noticing in Bobby began to make sense. Several people, including my mother, often thought Bobby was drunk or stoned because his eyes were droopy and his speech slurred. He wasn’t, this was just what he looked and acted like with EDS. He wasn’t falling asleep all the time because he was lazy. It wasn’t because he was overweight; in fact, obesity can be a side effect of narcolepsy.
Narcolepsy may have snuck in, but it was here to stay and demanded that we take notice. I explained narcolepsy to Bobby and shared all that I had learned. Bobby tried talking to his family doctor about his symptoms, but the doctor wouldn’t listen. This wasn’t unusual. Receptionists, doctors, and nurses didn’t really see him. They usually didn’t have the patience to wait while Bobby got his words out. He was easily intimidated and often didn’t understand what they said to him; they didn’t take the time to explain.
For his next appointment, I sent Bobby with information I had printed from the Internet about narcolepsy. The physician’s assistant read the information and researched it herself. She prescribed Provigil for Bobby, a controlled substance, which is a stimulant used to treat EDS.
It was a major accomplishment to have something that would help him stay awake; however, it was very expensive. Bobby had been stuck in an endless loop of insurance issues. If he had a job, he would lose any Medicaid benefits because he “makes too much money.” Then he couldn’t afford the Provigil. Without Provigil he couldn’t stay awake long enough to get through his shift and he would lose his job. Once he lost his job, he would apply for and get Medicaid reinstated, only to lose it again when he got a new job.
I began to notice the discrimination against people with intellectual disabilities. Our culture values strength over weakness, intellect over character, and accomplishment over a simpler life. Therefore, a segment of our population is systemically and repeatedly marginalized—unseen and unheard. When someone has physical disabilities that are invisible and intellectual limitations that aren’t always obvious, life is challenging in ways that most of us don’t understand.
You wouldn’t know any of this about my brother when you first looked at him. He looks like any other thirty-something guy. We need to allow for the possibility that we can’t see everything at first glance. Most people have a reason why they can’t do what we expect them to do. There is a reason why they can’t move as fast as the rest of us, why they stand when they’re supposed to be sitting, why they fall asleep when they should be awake, why they hold a sign on a street corner when we think they should be working.
Not long after, Bobby became very ill with pneumonia. It took an ER visit by ambulance and a week-long hospital stay to get his Medicaid reinstated. Once we did, I made an appointment for him at the neurology clinic at Upstate University Hospital. This was the first time he was examined by a neurologist. Frustrated that doctors didn’t seem to take Bobby seriously, I had decided that I would not only go to every doctor’s appointment with him but I would also go in the examining room. I explained to the doctor why I was convinced he had narcolepsy. I told him about the cataplexy, and the EDS that had started about six years ago, and how the incidents happened more and more often now. I explained that the physician’s assistant at his primary care doctor had prescribed Provigil, and it seemed to help. I asked the neurologist about other treatments for narcolepsy, specifically cataplexy. Despite my research, medical conclusions, and stories of Bobby’s daily life, the doctor refused to treat him for narcolepsy without an official diagnosis. I refused to leave the examining room until he agreed to refer Bobby for a multiple sleep latency test—the test used to diagnose narcolepsy.
More than six years after first noticing Bobby’s symptoms, we secured an appointment at the sleep clinic. I was anxious for the official report, and after a few days I called the sleep lab and spoke with the attending physician. He told me “Robert is a classic textbook case of narcolepsy.” He mentioned the cataplectic episode that he had witnessed when Bobby was called from the waiting room, and that he observed Bobby falling asleep later that night while getting water, during lunch the next day, and during conversation. A week later we had the official report and diagnosis.
The word narcolepsy comes from two Greek words roughly translated as “seized by numbness.” Experts don’t know for sure what causes it. Studies have shown that the neurological disorder may be caused by a number of genetic or biological factors in the brain, combined with an environmental trigger during the brain’s development, such as a virus. I couldn’t help but wonder if it was related to his diagnosis of Fetal Alcohol Syndrome, and that the environmental trigger in his case could be the alcohol and drugs his mother consumed while she was pregnant with him, or maybe it was the malnutrition he suffered as a baby, or the trauma resulting from his infant head hitting a wall. It didn’t really matter what caused it. The diagnosis explained the symptoms that had seized Bobby’s body and his life, but it wouldn’t change anything or prevent it from happening.
Narcolepsy would keep Bobby in this nightmare where he’s never fully awake and where peaceful sleep does not exist. His dream of having his own corner of the world—his grass to mow, his flowers to plant, his driveway to shovel, his home—died a little more each day.
Kelly Bargabos, a recent transplant from upstate NY to Southern California, is a witness and voice for those with invisible disabilities, as well as an advocate for narcolepsy awareness. While cultural ideals of what a “normal” life looks like can distort our perspective, Chasing the Merry-Go-Round allows readers to see the world through the eyes of a person with intellectual and physical disabilities, which can often be invisible, especially at first glance. Check out www.chasingthemerrygoround.com for more information.