ONE
THE FINAL SUNSET
âTHIS CANâT BE HAPPENING.â
The brightly lit pages of the textbook on my desk had just dissolved into a muddled mass of colors. My eyes were no longer working. In the course of several minutes, what looked like a dense swarm of bees had overtaken my field of vision.
âNot this. Not now.â
I muttered to myself with frustration. How would I explain why I hadnât completed my assignment?
It was a cool East Tennessee evening in the fall of 1996, just a few months shy of my twenty-first birthday, when I realized I would soon permanently lose my ability to see.
The trees on my college campus that afternoon were awash in fall foliageâdeep crimson red, brilliant pumpkin orange, and sawdust shades of yellow-brown. Outside the suburban Knoxville home Iâd been raised in, the yard was filled with brightly colored, fallen leaves. But in my second-floor bedroom, my life was taking a much darker turn.
I was hovering over my desk, with a blazing-bright lamp beaming down on my college literature assignment, as I tried to blink away the swarms of âfloatersâ obscuring the words on the page. Floatersâthose dark little specks that most people experience as fleeting shadows in their field of visionâhad been an increasing problem for me of late. I was having more and more bad days with them, a common symptom of my eye condition, retinitis pigmentosa. Without warning, the floaters would start piling up before me, like swarming bees. Iâd have to stop what I was doing and roll my eyes to make the floaters clear out, just to get a few moments of visual clarity.
But until this moment, the floaters had never prevented me from getting my schoolwork done. What should have been a thirty-minute reading assignment was taking me more than two hours, and I still wasnât finished. Feelings of frustration welled up inside me. No matter how frequently I rolled my eyes and rubbed them, all I could see was a teeming mosh pit of floaters. The textbook in front of me dissolved into a sea of black and white bubbles.
I grew increasingly impatient and tried every trick to work around the problem. Now nothing I tried was of help. No matter how close I looked or how much I tried to brighten the page, I could not make out any of the words. Finally giving into my frustration, I wadded up my notes into a ball and threw it against the wall.
Enraged, I shoved my books off my desk and onto the floor and screamed, âDamn it!!â
When my rage was finally exhausted, I sat there trembling, with a cold feeling of sadness that dripped down into the deepest crevices of my soul. Weighed down by the enormous gravity of my new reality, it was hard to move. Hard to breathe.
âThis is it,â I said to myself. This was what the doctors predicted. The blindness that had been closing in on me slowly since I was a small child had arrived. I was struck with the disturbing realization that very soon I would be reading my last page of print. Iâd see my last smiling face. Iâd scribble my last note. Iâd watch my final football game. Iâd enjoy my final sunset. All the gifts that vision grants us would soon be lost to me forever.
I looked around the room and could barely make out the details of my wall decorations. I mostly saw only hazy regions of light and dark, blurred by the tears that were filling my eyes.
Life as Iâd known it was coming to an end. I was completely unprepared for what would come next.
MAGICAL THINKING
We were warned this day could arrive nearly twenty years earlier. My parents noticed how their three-year-old toddler kept bumping into things, especially in dimly lit rooms. They took me to eye specialists at Duke University Medical Center, and it didnât take long for them to diagnose me with retinitis pigmentosa. RP, as itâs called, is the medical term for a group of rare genetic disorders that cause a gradual and irreversible breakdown of the photoreceptor cells in the retina. Globally, it affects about one in every four thousand people.
Early symptoms of RP typically include difficulty seeing at night and a loss of side vision or peripheral vision. At the age of three, I had both of these symptoms. The doctors told us that I could go blind eventually, possibly at an early age, although some people with RP donât lose their eyesight until middle age or later, and a lucky few retain minimally functioning eyesight their entire lives. We were cautioned that there was no real cure for RP and no effective means of treating it or slowing its progression.
My parents cried the entire drive home. Itâs hard to imagine what it must have been like to hear the news about their three-year-old child. The doctor hadnât given them much hope to hang onto. âTry to prepare for the day when Chadâs vision is gone,â heâd said. âIn the meantime, enjoy life while you can.â
For the next seventeen years, I followed only the second half of the doctorâs advice. I enjoyed my life, but I never spent a minute preparing to be blind.
I grew up in a modest single-family home with my parents and my older brother, Erick, in the suburban Knoxville town of Halls. My father, Charles, was a hardworking car salesman who could sell ice in Antarctica. My mother, Peggy, worked as a bookkeeper most of her life and brought that spirit of care and buttoned-up organization to our everyday lives. Everyone on both sides of my family had great eyesight, with no history of RP symptoms. Doctors later discovered that my parents each happened to be carriers of a hidden, or ârecessive,â gene for RP. That meant there was only a one-in-four chance that their offspring would get RP. I was the unlucky winner of that lottery.
And yet, I behaved like any other adventurous little kid. I was full of energy and determined to run and play as hard as my older brother, my cousins, and all my friends. Bumps and bruises became a way of life for me. My limited peripheral vision meant I often failed to see obstacles at my feet, so I tripped and fell down a lot. Sometimes the consequences were much worse than bumps and bruises. At age three, I broke my leg at my grandparentsâ house when I jumped out of the bed of our parked pickup truck. I still remember landing squarely on the gravel driveway as my left femur snapped like a twig. A shock wave of pain coursed through my body, and I could see the horrified look on my parentsâ faces as they came running. I was in a body cast for the next three months, and one of my earliest and most vivid memories was the terror I felt when doctors used power tools to remove the cast. I felt certain they were going to saw off my leg. Undeterred, once the cast was gone, I started running around and playing at full speed.
A couple years later, at my other grandparentsâ farm, I ran headlong into a steel pipe that I failed to see in the dimming light of dusk. The warm blood ran down my face and into my eyes as my parents carried me to the car. I remember the scent of the blood-soaked towel covering my head, and that the blood left a metallic taste in my mouth as we headed to the hospital emergency room.
I was back in that same ER less than two months later, this time after splitting open my forehead on a concrete slab in our backyard. On the way to the hospital, my parents chanced upon a police officer who gave the hospital emergency room a call-ahead, and then gave us a police escort with his siren blaring. The car windows were down, and the sound of the siren terrified me. âI donât want to go to jail!â I cried as my mother tried to calm me. The ER team was waiting for us when we pulled up in front of the hospital.
By that point, Iâd become such an ER regular that the hospital staff felt they had to intervene. They took me into a private room and started asking questions about what exactly had happened to me. Down the hallway, other staff were questioning my parents to make sure our stories were the same. They were concerned that I might be an abused child, but the simple truth was that my parents did not want to coddle me because of my impaired vision. They wanted me to run and play like any other healthy little boy.
Our eye doctor had recommended that I be enrolled in a local school for the blind, but my parents never considered it. Instead, they signed me up for soccer. When I was six, they put me in public elementary school, where I did fine, although there were a few bullies who made sport of my poor eyesight. A second-grade classmate liked to prank me by turning out the lights in a room, just so he could watch me struggle to find my way out. One day during music class, he taunted me with the clever nickname âblind boy.â So I socked him in his clever little mouth. When the music teacher scolded me for fighting, I told her what had happened. She turned to the other boy and said, âWell, you deserved it then.â
My father had been raised on a farm with his three brothers. He was an old-fashioned guy, a strict disciplinarian who believed strongly that hard work was the best way to keep young boys out of trouble. My brother and I had more household chores assigned to us than anyone we knew. Wednesdays, our fatherâs day off, was always a big workday. We had to clean and organize everything in our two-car garage, and also restack the twenty-foot-long woodpile outside of it. We even had to wash the dinner dishes by hand, although we had a dishwasher. Twice each week, my special assignment was to clean all the bathrooms in the house from top to bottom.
One morning my dad said to me: âThe yardâs looking shaggy, Son. It needs to be cut.â
âSure, Dad,â I said. âDo you know if we have gas and oil for the trimmer?â
âHere,â he said, âuse these instead.â He handed me a pair of lawn shears, normally used for trimming and edging near fences and walkways. I spent that afternoon on my knees, clipping the fenced-in area of our lawn by hand.
Was my dad a little harder on me? Maybe, but I think he worried about me growing up soft, and unable to deal with the challenging life that lay ahead of me. He knew the deck would be stacked against me once I lost my sight, and that I would need an edge to get ahead. He was right. My dadâs strict fathering made sure I was prepared to put in extra effort, which has been invaluable, because my everyday life requires a good bit of extra effort.
If there was any daylight remaining when our chores were done, weâd play football and Wiffle ball in the yard, or basketball in the driveway. Friends would often come by in the afternoon and wait for us to finish. Thatâs when I first discovered my inherited talent for sales and persuasion. I managed to convince our friends that if they pitched in and helped us finish our chores, our games could start that much sooner. We often ended up with a makeshift assembly line of neighborhood kids helping with household chores.
I played organized soccer, starting at the age of four. I was pretty good and even made the all-star team a few times. Sadly, I think I was more naturally gifted at both basketball and football, but my impaired vision made it impossible for me to compete on the school team in either sport. The lights in the high school gym were too dim for me to play varsity basketball, while most varsity football games were played on Friday nights under even worse lighting conditions. Soccer was the one game always played outdoors in the bright sunlight, so it was a perfect fit for my compromised eyesight. I usually played midfielder, where I could draw upon my seemingly endless energy.
I also joined the high school wrestling team, which is when I really got into weight lifting. I was all skin and bones during my freshman year, when I weighed about 105 pounds. With daily dedication to my regular weight-lifting routine, by my sophomore year, I had bulked up to 135, and by my senior year, I was 175 with barely an ounce of fat. My metabolism in high school was off the charts. Iâd go to McDonaldâs and drop $20 on a single meal including a Double Quarter Pounder, twenty Chicken McNuggets, a Chicken Fajita, large fries, and a couple of apple pies. I was so active all through high schoolâwith weights, basketball, soccer, wrestling, and runningâthat it was impossible for me to add any pounds without the help of a special weight-gainer supplement.
At age fourteen, we went to see a top retina specialist who made casual conversation with my mom and me during my eye exam.
âSo, what do you do for fun, Chad?â he asked.
âPlay soccer and basketball most days,â I said. âI run. I lift weights. And Iâm on the wrestling team in school.â
âReally?â He sounded surprised.
âOh, and I love riding my bike, swimming, and riding motorcycles,â I added. âLast summer I learned to water-ski.â
âThatâs terrific,â the doctor said. He straightened and turned to my mother. âIâve examined a lot of young people with RP, and Iâve never seen anyone as physically active as Chad. Itâs very impressive, and very rare. At this age, most people with RP avoid these kinds of activities.â
My teenage ego swelled with pride. In my mind, I heard the doctor say: âChad is special. Maybe his RP isnât that bad.â
After that day, I formed a cocoon of magical thinking around my condition. Because the doctor couldnât say with any certainty when Iâd lose my sight, I told myself, Maybe it wonât happen until Iâm much older. Maybe Iâll never go blind. Maybe Iâll die of old age before RP ever catches up to me. Problem solved!
This magical thinking made me determined to live as though I were invincible. I formed a self-image apart from my eye condition. I refused to allow RP to stop me from doing anything I wanted to do. I would not be denied, and that became my identity. I would be normal with a vengeance.
I dated a few girls, rode my bicycle, and really enjoyed learning to ride jet skis and motorcycles. Despite my narrowed field of vision and difficulties with night blindness, I was a typical teenage thrill seeker with a somewhat unrealistic sense of risk and mortality.
At age sixteen, I wanted to learn to drive, and I asked my parents to sign the consent forms to qualify me for a driverâs license. I got a different answer from each. My father didnât think it was a good idea, given my eye condition. My mother didnât love the idea, but she felt they had to consent anyway. She knew that my time with eyesight was running out, and this would be the only time Iâd ever get to experience the freedom of driving.
They went out of their way to accommodate my driving limitations due to night blindness. I would drive to school most mornings, then drive to my after-school job working in the stockroom of a suburban clothing retailer. When I got out at 10:00 p.m., my parents were there waiting for me. Iâd ride home with one of them, while the other followed behind the wheel of my car.
All along, I tried my best to ignore the periodic attacks of floaters. At first, I found I could squint my way through them, but the attacks gradually became more common and lasted longer. The floaters would often multiply whenever I was fatigued, so Iâd have to stop what I was doing and rest my eyes until they receded.
I pretended nothing was wrong, but I found myself becoming impatient and short-tempered. One day w...