Mental Illness Can Be Hidden Beneath the Surface
The reality of diseases like narcolepsy, epilepsy or chronic pain is very different from wrestling with depression, anxiety or panic disorder; and the challenges created by cognitive limitations and learning disabilities affect people in ways most of us will never understand. But the one thing they all have in common is also the one thing that makes them the most dangerous for those that have them. They are invisible. They are hidden from our sight, not transparent to the onlooker or obvious to strangers, especially at first glance. There is no outward sign that fits our culture’s preconceived ideas of what defines a disability and people who struggle with these are often marginalized and misunderstood.
Never has this been more obvious than with the recent celebrity suicides that surprised us all. They surprised us because we thought we knew them. We thought that what we saw on the surface was all there was to see. We believed the image portrayed on the television, in the magazine, at the store, at the movies, everything we read about. We thought they had it all — money, fame, beauty, talent, popularity — all those shiny things we spend our lives wishing for, admiring or envying. But the truth is, we don’t see everything at first glance. It is impossible to see things that are hidden from our view, some intentionally, some just by nature of the thing that is there, lurking beneath the surface.
In the nineties, I had a picture that hung on my wall at the end of a short, narrow hallway. It was a psychedelic, random pattern of different shapes and shades of brown and orange. The trick was to stand in the right spot, not too far or too near. You had to be just the right distance from it, and then fix your eyes at the center of the pattern and wait. I’d yell, “I’m in!” when my eyes adjusted and I was able to see the image hidden within the pattern. A shipwreck lay cockeyed at the bottom of the ocean in the midst of a coral reef. Plant life had taken over what remained of the ship, the boards worn and faded by the briny water. A treasure chest had burst open when it slammed into the sandy floor and gold coins and pearl necklaces were spilling over the top and down the side. A peaceful looking shark swam in and out of the ship’s windows. I paraded everyone that visited my home in front of that picture. My friends and family could always “get in” faster than me; I had a hard time. The trick was being still long enough to let your eyes see what was there.
Invisible disabilities come in many forms, and most of us have been or will be impacted by them at some time in our lives. I have a brother who lives with invisible disabilities and I’ve witnessed firsthand how it has impacted his life.
His narcolepsy is not the comedic Hollywood kind most people associate with the disease, especially after Modern Family used it as a punch line with Phil Dunphy and his family, or when The Simpsons used it for a laugh. No, my brother’s narcolepsy suddenly paralyzes his legs so that he falls to the ground when he laughs or is scared or excited, sometimes for no reason at all. Because of his excessive daytime sleepiness, he slurs his words and his eyes are droopy, half open. Some people assume he’s drunk or stoned or just plain lazy. He’s not.
He’s also intellectually disabled. Some people call him slow. They called him “retard” in school, but he’s not. I was always defensive when friends, family or strangers referred to my brother as slow. I hated that term. I thought it was a euphemism that was outdated and politically incorrect. But it turns out it’s true. I have found that terms like “developmental disability” or “intellectually disabled” are fine for the general public and help us keep labels from becoming slurs, but at times they are too broad and abstract when I am trying to paint the picture of my brother’s life. I learned after the first or second phone call trying to get him the help he needed that you had to skip politically correct lingo and go right to the honest and specific facts. “His IQ is 72. He reads at a 2nd-grade level, he’s slow…” The truth is, the world moves at a speed that for my brother and people like him is just too fast: he can’t keep up.
You wouldn’t know any of this about my brother when you first look at him. He looks like any other forty-two-year-old guy. Disabilities are often invisible. 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 stand on a street corner holding a sign when we think they should be working.
Often, the most profound problem faced by those with invisible disabilities is the expectations of other people and how those actually limit their ability to live successfully in this world. I believe awareness is the first step to understanding. We need to talk about these things, with each other, with our children and families, as well as in the media.
Understanding will allow us to make a difference. We need to realize that we all want the same things: to be seen and heard, to have a voice, to be part of something bigger than ourselves and to add value to this world in the form of family, work, and relationships. We all want to be known for who we are, not by what we can or cannot do.
Acceptance is the most powerful gift we can give. Truly accepting someone the way they are, means letting go of what we think they should aspire to and need to be happy. We need to challenge the cultural (and our own) ideals of success and happiness.
When we wake up to horrible news about our heroes, we want answers. We want to know why to make sense of it. We talk to our friends and tweet, snap and post. Why did they? How could they? We look for ominous reasons — divorce, affairs, addiction or crime, convinced there must be more to the story. Yes, there is likely more to the story but it may not be what we think. It could simply be an illness or disability — mental or physical, neurological or intellectual — that was hidden from all of us. Before we pass judgment, gossip, walk away or think we know better, we need to allow for the possibility that there’s more to the story.
I don’t know what became of that psychedelic picture with the hidden shark that used to hang in my hallway. I lost it somewhere along the way. But I managed to hang on to the lesson. There is usually more than what we see at first glance if we take the time to find out what is hidden beneath the surface.
About the Author
Kelly Bargabos, author of Chasing the Merry-Go-Round: Holding On To Hope & Home When the World Moves Too Fast, is a witness and voice for those with invisible disabilities. 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. Poignant, enlightening, inspirational, and universal, her memoir is a story about struggle and hope, survival and resilience, and most of all, the gift of acceptance and love.
