Today, being blind does not scare me. It hasn’t scared me for more than a decade. I must remind myself that this aspect of my existence, which is like any other as far as I am concerned, stands out for others like a baby on a battlefield—and is terrifying to them. I have to remind myself that years ago I, too, was terrified.
Of course I can remember the fear. But I remember it the same way you might remember cowering in your bed at night as a child, frightened of the monster under your bed. You now understand there never was a monster, that your fear was irrational, self-imposed, the product of your imagination. You can recall feeling terror back then, but when you lay down tonight, you will not be afraid, not of nighttime monsters, at least.
That’s how I feel about blindness. It is the monster that didn’t really exist. Odds are that you find this hard to believe. I understand every detail and every practicality of blindness. I’m an expert at being blind. It is familiar, comfortable, normal, routine. Still, you likely don’t believe me when I tell you it isn’t that bad. I’m the exasperated parent, stomping my foot and repeating, “There are no monsters, go to bed!”
That is the point. Most people have little or no experience with blindness, but nonetheless harbor a visceral fear of it. I had such a fear when we left Dr. W’s office the day I was diagnosed with retinitis pigmentosa, the disease that would slowly take my sight. I was 13, but I felt a lot older.
Blindness is my death sentence, I thought. It will end my life as I know it. End independence and confidence. End strength and leadership. End achievement. Blind, I will cease to be special, funny, successful. I will be helpless, pathetic, weak.
I am living a dream — child prodigy and sitcom star — but I know in advance that I am experiencing the best my life will ever offer. This foresight is a cruel persecution. The anticipation of my decline is not the worst part. The worst part is that the unwelcomed prophecy has stolen even the triumph before my fall. There is no more joy when I take the stage, no pride when the crowd cheers. In my achievements and blessings I see that which I know I will lose. I experience them in preemptive mourning.
I mourn the things I’ll never have, too, like a wife, a partner in life. I will be alone. How can I capture a woman’s affections while in a process of total ruin? Can I expect someone to fall in love with me as my every attractive quality is fading away?
I will never be a father. It is for the better. No child deserves that. Besides, I’ll no doubt remain a child myself, dependent on my parents. Whom will I turn to when they are gone?
Psychologists have a great term: awfulizing. Put simply, to awfulize is to make something its most awful in your mind. Awfulizing is a mental construction, the product of imagination. But we experience as reality that which we awfulize. It is our manufactured truth.
Through my teenage years, I awfulized blindness. I did not know the first thing about it. I had no experience with it. I had not thought much about it. On this blank canvas of ignorance, my fear painted with a palette of anxiety, insecurity, and doom. The horrific scene it created captivated my attention, drew me in, consumed my thoughts, overpowered me.
It felt so real that it became real. I could not look away. I saw my destination, my future, my fate in that scene, and I did not question it. Blindness was my death sentence. It was only a matter of time.
Fear’s work does not end with the baseless reality it concocts in your mind. That is where fear’s work begins. To perpetuate its reality, fear must lull you into playing your part. Fear’s accomplices in this elaborate con are your villains and your heroes.
Fear conjures a world in which these villains and heroes command responsibility for your fate like the gods of Greek mythology. Blame your villains, fear whispers in your ear. The fault lies with those around you. The problem is your awful circumstances. Worship your heroes, fear admonishes. They have the power to solve your problems, to make you happy. They can save you.
The drama is epic and endless, shifting and complex. You sit back and struggle to take it all in, to keep it all straight, to see how it will shake out. With supernatural villains and heroes, fear procures for the awful shadows of your imagination your willing suspension of disbelief.
That’s the con. The details are unimportant. The drama is smoke and mirrors, a diversion. What matters is that you have accepted the reality fear has created for you. You are a cooperative participant in that unfounded reality. You do not question the premise. You play nice. You abdicate responsibility. You blame and credit others. You outsource your destiny.
I was trapped in an awful world of gloom and haze by the promise of rescue. My heroes, brilliant research scientists, would deliver a treatment or a cure for me. I was certain of it. Because they would soon rescue me, I did not need to confront Blindness. I did not need to rescue myself. I was paralyzed by hope.
That was fear’s con. The drama, villain and heroes in conflict, drew my focus to the stage. The unconvincing details of the set faded away, as did the audience around me, the theater. There was only the play. I watched, my disbelief willingly suspended. I believed in Blindness. I believed in Science.
I was Science’s active, enthusiastic fan. Shortly after the diagnosis, my parents set out to understand the state of the research efforts to develop treatments and cures, and they devoted themselves to the support of that research. I joined my parents in this mission, serving as a spokesperson in the media, at fund-raisers, and in governmental lobbying efforts. Like my parents, I will forever feel profound gratitude for the many angels who helped us raise funds and awareness. I’m proud of my parents and glad to have played my part in the scientific mission.
Looking back, however, I realize that my crusade for the cure played into the hands of my fear. It was cover for the outsourcing of my destiny. I felt I was taking control, taking charge, swinging at the proverbial curveball life pitched at me. I was not.
I confused fighting for a cure with confronting my fears. The embodiment of hope and optimism, I played the leading role in my fear’s epic drama. I projected outward courage and bravery in my charge for research dollars. I would surely be rewarded with a Hollywood ending, saved in the nick of time. Disaster averted, problem solved. It felt good to play the part.
Psychologists have a term for this, too: denial. I thought I was taking a stand when I was really running away. My fight for a cure fueled the flames of my fears. I was reinforcing the awful narrative—Blindness as death—by committing myself to its defeat at the hands of Science.
I did not question the premise, fear’s premise. I cheered frantically for my heroes. I bet it all on their victory. Blindness grew uglier, more awful. It had to be vanquished. It just had to be. Blindness is death. Fight. Survive.
While I fought, while I ran, my retinas deteriorated. Blindness was on my heels. Science’s cure was miles back, crawling. Rescue was decades away. The equation flipped. Blindness now, a cure in my 30s, 40s, or 50s. I am not going to win this race. Science will not save me.
My fears foretold my awful fate. There would be no last-minute pardon from the governor. No stay of execution from the Supreme Court. It was time to accept my death sentence, to face it like a man, to lie still in bed, to wait for the monster underneath to attack.
Eyes Wide Open
I had an epiphany, a revelation. There is no Blindness, only fire hydrants, those who are unaware of my challenge, disappearing computer pointers on the screen, an open landscape of practicalities stretching to the horizon.
The scene on fear’s canvas is a fiction, a mirage. You will never face fear’s execution day. But tomorrow you will face your life, and the next day, and every day thereafter, until you have none left. Those days unlived are reality’s blank canvas, and you are the only creator.
The palette of your fears is limited and ugly: anxiety, insecurity, doom, and loss. But you have a million more colors. Countless hues of strength, an endless rainbow of adaptations, growth bright and beautiful. You paint one stroke at a time, one day at a time, breathe a single breath after your last, a single breath before your next. You will never control tomorrow, but you can always choose whether to act today, and how.
With empowerment comes responsibility. There are no villains, no heroes, no gods on Mt. Olympus. No monster under the bed. Those shadows of imagination are excuses, rationalizations, justifications, stall tactics, cop-outs. Without them we are accountable. That is why our fears manifest these figments in defense, and it is why we cling to them. It is why we must let them go.
I chose to let go of Blindness. I stepped out of fear’s tunnel into the wide unknown, shifting my focus from the foreground to the horizon. After fear’s narrow, contrived, myopic scene, reality’s expansive landscape of potential was exhilarating. My awfulized assumptions about Blindness had felt like immutable truths, inescapable reality. Now they were exposed as fear’s self-limiting fictions, fish swimming backward through my mind. My destiny was again my own, my future unbounded. I could stop running.
The terrain ahead was undefined and uncharted. Fear’s superficial struggle with Blindness was awful, but it was simple, too. Reality was far more complex. I contemplated the myriad discrete, specific challenges I would face—physical challenges, practical challenges, emotional challenges. I had a lot to learn and a lot to figure out.
It was my responsibility to do so. I accepted the obligation to help myself, to achieve my potential, and I committed to hold myself accountable at all costs. I took ownership of my fate. It weighed heavy on my shoulders.
I swam in a swirl of emotions. The heroes and villains I had come to know so well had vanished, and I felt an odd sense of loss. I was embarrassed to have run for so long from my illusory villain. Thinking about the years I’d wasted borrowing imaginary troubles and the agonies I had needlessly inflicted upon myself, I felt a deep sadness. I was impatient to master the tools and techniques I had learned about, and to discover others. I felt great joy. I felt immense gratitude. I felt profound relief. I was giddy and somber at the same time, both energized and exhausted, inspired and overwhelmed, confident and apprehensive. It was confusing.
Lying in bed that night, I was at peace with my confusion. I did not have the answers yet, but for the first time I had zoomed out far enough to focus on the right questions. It was a good start. I was many things, felt many emotions. But I was not afraid. It was a good start indeed.
This post courtesy of Spirituality & Health.