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.

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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.

Helping Ourselves and Others Cope With Invisible Disabilities

Many of us struggle with or are close to someone who struggles with invisible disabilities. Invisible disabilities come in many forms.  From depression and anxiety to severe allergies, from intellectual limitations to autoimmune diseases, these disorders exist all around us. An invisible disability, whether physical, mental or neurological, is one that is not obvious at first glance. They are hidden from our view. There is no outward sign that fits our culture’s preconceived ideas of what defines a disability. An invisible disability causes limitations with movements, senses or activities, or creates other challenges that can make ordinary life more difficult. Because of the invisible nature, people that struggle with these are most often judged, misunderstood and marginalized. Some common examples include: Psychiatric disorders (depression, PTSD, bi-polar, schizophrenia); Intellectual limitations (Learning Disabilities, low IQ, Traumatic Brain Injury); Physical (Narcolepsy, Epilepsy, Chronic Pain)

HOW do we help those we love cope with these disorders?

For me it’s about these three things—

Awareness. Understanding. Acceptance.

 1) Awareness is the first step to understanding.

·        Learn all you can about the disability.  To be able to help someone with an invisible disability, it is important to seek knowledge about their disability—what are you dealing with? What is the scope of limitations or challenges they endure? What treatments or medications are available to them? Where and how can their boundaries be challenged or pushed? For example, a person with allergies can possibly pre-medicate if they need to be somewhere where a dog is present.  But a person with toxic sensitivities does not have an option.  And while the potential of a person with limited intellectual capacity can be maximized, pushing for more than this can cause frustration and a sense of defeat. Having said all that, more than anything else, we need to allow for the possibility that we may not know everything about a person or what they are struggling with.

   

    2) Understanding will allow us to make a difference.

·      Realize what you have in common.  People with invisible disabilities want the same things you want.

o   To be seen and heard. To have a voice.

o   To be part of something bigger than themselves and to add value to this world in the form of family, friendships, workplace, relationships

Most of all, they want to be seen for who they are, not by what they can or cannot do.

·       Encourage them to aspire to and create the broadest life possible.  Whether this entails medication, special training, or environmental assistance, make certain that you reach for everything you can to help provide the fullest life possible. Let go of what you “think” they should aspire to and need to be happy. Challenge the cultural ideals of “normal.”

·       Understand and help overcome frustrations.  The anxiety-ridden friend who cannot commit to a social gathering may be annoying.  The person with environmental allergies who asks what chemicals you use before they come over may seem out of line. The relative with bi-polar disorder who inhibits conversation at the dinner table may seem unbearable. But know that for all your frustration with them, their frustration with themselves is far greater.  Showing understanding while letting them know they are valued goes a long way in alleviating their frustrations—and   yours.

3) Acceptance is the most powerful gift we can give.

·        Give the gifts of acceptance and love.  We all want to feel relevant. We all want to feel we have a place in the world, and in the hearts and minds of others. But when we have an invisible disability, these feelings can be elusive.  By providing unconditional acceptance and love, we turn the elusive into reality.

HOW can we put this awareness, understanding and acceptance into daily practice?

The SEE Approach

EVERYDAY, all of us encounter people in different situations and form judgments right away, without all the facts. It is human nature. Often, there is more to the story than what we see at first glance. I have developed a simple formula or acronym to challenge myself to approach people I encounter in a different way. I call it the SEE approach.

o   Stop.  Pause. Take a breath, a beat, a moment, before you do or say something impatient or hurtful, take a moment to consider.

o   Evaluate: Ask questions. Is there impairment? Could there be more than what I see on the surface?

o   Empathize: Put yourself in their shoes. Give compassion.

Stop.

Evaluate.

Empathize.

SEE.

-KB

See

verb \  ˈsē \

to perceive; to come to know

I wrote Chasing the Merry-Go-Round because I wanted to tell my brother’s story. I wanted people to see what life is like for someone like him. I also wrote this book because my brother changed how I see people. In fact, one of the early working titles of my manuscript included the tag line, “How My Brother Taught Me To See.”

Although it has taken me a lifetime with Bobby to learn this lesson, and I’m still learning today, there was a moment of revelation that I distinctly remember. In the chapter titled “Treasure” of Chasing, I recount the day I realized that I needed to see differently. Bobby and I were in the middle of one of our checking-in-at-the-end-of-the-day phone conversations:

I was on the couch watching television, half-listening to Bobby on the phone, when he started to tell me about the great deal he got on a used stereo and speakers for twenty-five dollars at the thrift store.

“Bob! Why? Why would you spend your money on a stereo? You already have two.” I rolled my eyes and threw my head back in frustration.

“Yeah, but this one was nicer. Once I get it working, I’ll sell the other two.”

“Don’t you think you should save your money for groceries or rent?”

“You know, with the small life I have, things like this make me happy.”

His last line stopped me in my tracks. He was right. I was wrong. Who was I to judge what made him happy? Who was I to judge someone with a different-sized life than mine? Used stereos and speakers from the thrift store were a waste of money to me, but to Bobby they brought happiness. He loved a deal. He loved finding treasure in what other people considered junk. He loved the challenge of fixing something that was broken.

If you read our story in Chasing, I hope you will see differently as well.  I hope you will see and understand people like my brother, to challenge our cultural norms and how we expect people to behave and act. I hope you will begin to think twice before you judge someone who isn’t living their life the way you think they should—whether it’s a family member, a stranger in the grocery story or a man on a corner holding a sign.

See.

-KB