Blind Man's Bluff Page 2

  “What difference does it make?”

  The answer, you realize, is that he prefers not to see you in a hospital bed. There isn’t anything wrong with your body, nothing to prevent you from moving about, and seeing you in bed only reminds him that you are losing your sight. What he tells you, however, is that the medicine isn’t going to work if you’re lying around all day.

  The next time Dr. Nair stops by, you ask him if this is true. It isn’t, he assures you, explaining the physiology of it all. You don’t have the heart to tell this kind man that despite what you told him during your first visit, you’ve never really wanted to be a doctor. You began saying this back in elementary school, noticing how much it impressed grown-ups. Lately you’re not sure what you want to be, what you can be, with the entire eye chart a shapeless blur. Gone is the bald spot in Dr. Nair’s beard. Gone is his beard, his face. At this point, instead of letters, you’re counting the number of fingers he holds up, and you can only guess.

  Before your parents’ next visit, you put on jeans and a T-shirt. You don’t mention that you were right about the medicine. Your mom and dad have continued working a full day only to drive across town to the hospital, nothing to do once they get here but sit in a chair and watch you listen to the TV. They are as frustrated as you are when after three days and countless popsicles from the pediatric nurses, your vision is worse than when you were admitted.

  Only two days remain in your junior year of high school. The bells have been turned off. Students with normal numbers of absences aren’t required to attend. It isn’t the number of days you’ve missed but final exams that make your presence mandatory.

  Not one of your friends is in school. With everything going on, their finals and your latest hospital stay, you’ve hardly talked to any of them in over a week. Your friend with the car offered to visit you in the hospital, but you declined. It was only a few days. You’d see him soon enough.

  With no one else to talk to, you sit with the Indian kid other Indian kids tease for having a name both American and uncool. Let’s call him Melvin. More than his name, Melvin is ostracized for never taking honors classes and barely pulling out B’s and C’s in his regular classes. Next year, when most of your friends become acquaintances and acquaintances strangers, you and Melvin will find yourselves killing time with each other in the library and office of your guidance counselor more days than not. Your two best friends will remain close, but you can no longer look for all the people with whom you used to sit in the library and cafeteria. After a month or two, they no longer look for you.

  It feels strange, presenting your teachers with documentation of where you’ve been and what you cannot currently do. You never have been the doctor’s note sort. For several years, you haven’t been any sort, really, and you can’t help wondering if this new difference might be the result of wishful thinking gone awry.

  Your chemistry teacher, that subject not particularly compatible with an oral exam, lets you keep the C you are fortunate to still have after weeks of not seeing the chalk-scrawled equations. Ditto precalculus. You thought you had an outside shot at bringing your B in Spanish up to an A with a solid performance on the final, but the math shows otherwise. You forgo that final, too.

  You rejoin Melvin in homeroom, nothing left to do but last the day. Melvin isn’t even in your regular homeroom, but a few teachers have begun their summers a little early. Textbooks had been collected while you were gone. A custodian helps you open your locker, the combination too small for you to read. The clang of it closing echoes in the empty classrooms. The lights are off in so many of them it hardly feels like school.

  TV has become radio. You find yourself watching a lot of stand-up comedy, game shows, CNN. Perhaps the information you retain will mask what you don’t know—what you cannot know because you cannot see. Will people you meet question your intelligence? Blind, after all, is a common synonym for ignorant.

  You memorize buttons on the microwave, track listings on all your CDs, heating instructions for your favorite frozen foods. You’ve always had a good memory. When you were younger, your parents refused to play Trivial Pursuit with you, saying you had memorized all the answers. You told them it wasn’t cheating if the answers came from your own brain, that remembering was the same as knowing.

  The blind spots continue to expand. Every day there’s something new you can no longer see, another shelf of memory claimed by everyday tasks. How much space does your mental hard drive contain? In seventh grade, you finished a not-too-shabby third in the school spelling bee, competing against eighth and ninth graders, but yesterday you couldn’t remember if monitor is spelled with an -or or an -er.

  Six nights a week you schedule a date with Jeopardy! and Alex Trebek. Unlike in Trivial Pursuit, you don’t need anyone to play with, and Trebek helpfully reads all the clues on the screen. You’ve always found the whole phrasing-answers-in-the-form-of-a-question thing kind of pretentious, but it’s still questions and answers—questions that have answers.

  Once in a while, you come upstairs to watch TV with your parents. After a recent argument, the distance between your bedroom and the living room, between you and your parents, feels greater than it used to. Weeks afterward, you no longer recall what was said, only that it made you cry, which made your mom cry, and after that nobody knew what to say.

  Your dad changes the channel to Jeopardy!, a peace offering. Four categories in, your parents notice you’ve only missed one clue. Early in the Double Jeopardy round, you consider telling them it’s a rerun, that you remember the answers from a prior airing, but you keep it to yourself. What they don’t know won’t hurt them.

  2

  LAND OF THE RISING SUN

  WEEKS AFTER MY DIAGNOSIS, we received a call from a Harvard researcher who specialized in my condition. Despite his upbeat tone, he agreed with the Johns Hopkins ophthalmologist who had put us in touch, that no treatment existed for Leber’s hereditary optic neuropathy.

  “Are you researching cures?” Mom asked when I passed her the phone.

  “Yes and no,” he said.

  His research involved similar conditions, related mutations, information contained in the mitochondria. Rare as Leber’s was, the race for a cure wasn’t exactly a wind sprint.

  “So there’s absolutely nothing we can do,” Mom said.

  The researcher hesitated. In a few countries, he said, some doctors were using a drug they believed beneficial for Leber’s patients. A twelve-year-old boy in Japan had been administered idebenone and experienced a full recovery of his lost vision. There remained some uncertainty, cautioned the researcher, about whether Leber’s was actually what the boy had and whether idebenone was what caused his recovery.

  “How do we order it?” Mom said.

  Because idebenone had not been approved by the FDA, it could only be procured by visiting one of the countries he had named.

  “If it was your son, would you go?” Mom had been talking with the researcher for nearly an hour. His young daughter, he had mentioned, was severely hearing-impaired and was about to undergo another in a series of experimental surgeries.

  “I probably would,” he said.

  The idebenone-friendly doctor with whom the researcher was most familiar was the very one in Japan who had possibly cured the twelve-year-old boy. My parents priced plane and hotel fare with my uncle, the one who had helped us acquire my car. He had recently opened a travel agency, but even with his discount the cost was enormous. There must be cheaper hotels than the Tokyo Hilton, but his agents had never booked a trip to Asia. On top of travel, the doctor’s visit and year’s supply of idebenone wouldn’t be covered by insurance.

  Mom and Dad never mentioned in front of me how much my malady was costing them, but I had overheard some numbers. My parents had worked their way up from school custodian and secretary when I was born to jobs in purchasing for the school board and insurance sales. Since moving into my grandparents’ old house when I was seven, they had been saving u
p to move into the city. Guilty as I felt, I raised no objections. If there was a one-in-a-thousand chance this drug could work, and no one gave us any numbers, my vote was for rolling the dice.

  Mom and I would depart in mid-September, two weeks into my senior year. To save the cost of a third plane ticket, Dad would sit this one out. My teachers were excited for my adventure. We got to know one another quickly in light of all the accommodations I now required. The owner of my regular comic book shop gave me money to get her a T-shirt from Tokyo’s Hard Rock Cafe. I still picked up new comics every Friday, hopeful that I might be able to read them again.

  Mom and Dad met with the bank about converting dollars to yen. Doctors said there shouldn’t be any complications with bringing the medicine back into the United States. The question of how we would get from Narita International Airport to downtown Tokyo, or from the Tokyo Hilton to Keio Hospital, armed with exactly three Japanese phrases—good morning, excuse me, and yes—remained unanswered. Also uncertain was my pronunciation and translation of these phrases, learning them as I had from an episode of Designing Women.

  Our plane departed Charleston’s Yeager Airport in the early evening, landing in Lexington, Kentucky, half an hour later. From there, we settled in at O’Hare for a five-hour layover before our eight-hour leg to Anchorage, Alaska. Two hours later, an eleven-hour jaunt delivered us to Seoul, from which point, after another two-hour layover, we finally touched down in Tokyo. We weren’t surprised when my uncle’s travel agency folded after only a year.

  In her bolder, teenage years, my mother once climbed onstage at a Blood, Sweat & Tears concert to plant a kiss on the lead singer. Her sneaking out at night became a problem my grandfather solved by chaining the axle of her car to an oak tree. Responsible, traditional mother that she became, I wouldn’t hear these stories until I was much older. Digging through her purse for our week-old passports, she was the same timid traveler as her son, whose sixteen years had taken him no farther than his grandparents’ trailer park in central Florida.

  Gomennasai—excuse me—we found ourselves saying to everyone we spoke to, beginning with a cashier at an airport concession stand. Mom read me the price in yen for two Diet Cokes, and in my head I calculated how much we were actually paying. Eight dollars. The only drinks Korean Air offered were warm soda and warm juice. We didn’t know the word for thank you, so we smiled big and hoped everyone understood our gratitude.

  In second grade, we moved from an apartment in the city into the rural house where Mom had grown up. Right outside city limits, the unincorporated area was marked by lush forest, creeks at the bottom of hills, and a lot of dirt roads. That there was anything inferior about an address with a route number instead of a street name didn’t occur to me until seventh grade. Social lines at John Adams Junior High were drawn between kids from “the creek” and kids from South Hills, like something out of S. E. Hinton.

  Whether it was the school bus I rode, not knowing anyone in any of my honors classes, or my Levi’s coming from the shelf marked husky, my modest popularity in elementary school didn’t make the leap to junior high. Not yet aware of this, I pulled on my best Bugle Boys and snazziest Alex P. Keaton sweater and asked my parents for a ride to the autumn dance. Egged on by a friend, I let him ask my crush if she would dance with me. He returned with a broad smile. She had accepted.

  Annie Abadopolis was in six of my seven classes, the first name on every roll. She had a short, Sheena Easton haircut and a way of teasing our world geography teacher that made her seem more like his peer than our fellow student. As far as I could tell, she had no boyfriend—until we found each other near the free throw line and I placed my hands around her waist. Annie rested her hands on my shoulders, and we swayed from side to side for all four minutes of “Never Tear Us Apart.” We only danced the one dance, but we didn’t dance with anyone else.

  All weekend I wondered how it would work: Would we rendezvous at each other’s lockers between classes? Before the first bell? Would a mutual friend smuggle a note between us to clarify our new status? How it worked, it turned out, was that we would dance our dance and never speak a word of it, or to each other, for the balance of junior high.

  My seventh-grade yearbook picture doesn’t show a fat kid, to the extent one can tell from the head and shoulders. Aware that the waist size of my jeans was larger than that of other kids my height—thanks, Levi Strauss, for stamping those black numbers on the outside of your jeans—I flouted the tucked-in trend to hide those gaudy integers. A glance at my eighth-grade yearbook, however, shows the emergence of a double chin. Thank you as well to my hometown’s answer to Annie Leibovitz for managing to capture my entire torso, my windbreaker cascading toward the picture’s lower border in a manner reminiscent of a muumuu.

  A year earlier, Mom had joined Weight Watchers and easily lost her goal weight of fifteen pounds. Nothing sounded worse than attending her weekly meetings, looking on while women exchanged soup recipes, but maybe I didn’t have to. I already understood how to measure foods into what the program called exchanges. Most meals Dad cooked were Weight Watchers friendly, and I had come to prefer the diet sodas we had been drinking for years.

  I told no one I was dieting. Telling people you’re trying to lose weight only underscores that weight needs to be lost. One day in the Taco Bell drive-through, while Mom calculated the Weight Watchers value of a bean burrito, I provided the answer a little too quickly. I was known in the family for having a quick memory, but Mom did a double take.

  “I’m keeping track of what I eat,” I confessed.

  My diet continued with Mom’s assistance. For lunch, I made sandwiches with low-fat meat, low-fat cheese, mustard instead of mayo, on 35-calorie wheat bread with more air pockets than a cheap sponge. I filled Ziploc bags with celery and carrot sticks—unlimited foods—and a recycled yogurt container filled with applesauce. Rather than a svelte appearance in my husky jeans, the biggest result was ravenous hunger after lunch and dinner. Still dining several times a week at Taco Bell, I might have strayed from the core tenets of the Weight Watchers plan. Nor did it help that my only exercise was thumb aerobics of up-up-down-down-left-right-left-right-B-A-start on a Nintendo controller. According to the scales, two months of dieting had taken off between four and six pounds.

  By tenth grade, I had given up on dieting, though I continued to count fat grams. The fourteen-year-old looking back at me in the mirror had a narrower face and, if I tilted my neck at a slight upward angle, only one chin. The changes came less from dietary choices than a small growth spurt. Nor did it hurt that I tagged along with my parents to the YMCA as they took up tennis. I was far from thin, but I finally managed enough confidence to tuck my shirts into those sky-blue Levi’s. To my daily disappointment, despite my sartorial adjustments, my popularity didn’t budge.

  Being a teenage boy without self-confidence or a girlfriend placed me squarely in the majority of my age bracket, which didn’t make me feel any less alone. The teenage years are an interminable parade of someday and soon, hour after hour of wishing you could fast-forward to life’s good parts. I was ready for a change, ready to be changed, but the loss of my sight a month after turning sixteen wasn’t what I had in mind.

  I had moved from the car’s driver’s seat back to the passenger side. I had begun reading textbooks with my ears instead of my eyes. I adjusted my career plans from doctor to the more modest, less vision-dependent physical therapist. Soon I would rethink my enrollment at West Virginia University, the giant school most of my friends were attending.

  People in Tokyo who didn’t speak some English were rare. Even the less proficient, when we gomennasai’d them on the street, mustered a perfectly enunciated “I do not speak English.” Noticing our confusion by the subway ticket machine, a man in a baseball cap gave us tickets from his pocket. We tried to pay him, and he waved us off with a smile.

  The Japanese-English dictionary we had bought from Waldenbooks was no help with the Japanese characters on signs
and menus. We hadn’t bothered with guidebooks or sightseeing recommendations, but we saw plenty, much of it several times over as lunches and dinners became hours-long expeditions. At one point, we ascended a subway escalator to find ourselves on the fourth floor of a department store that seemed to sell nothing but kimonos.

  Street smells alternated between frying meat and curbside garbage, both odors intensified by the summer heat. We walked for miles and miles, calves burning, blisters forming on the pads of my feet. We were lost even when we knew where we were.

  The morning of my doctor’s appointment, Mom tried to make heads or tails of the machine that dispensed subway and train tickets. I wished the man in the baseball cap had shown us how to use the machine instead of giving us his tickets. My disability only a few months old, I hadn’t yet learned the difference between good help and bad.

  At last a transit worker assisted us with the machine, and we followed the crowd to the platform. Within minutes we were surrounded inside the train by dozens of commuters, bodies pushing against bodies. For a long moment the doors wouldn’t close. I folded my arms, making room.

  I listened to the garbled voice in the speakers for the name of our stop. When I heard it, I told Mom.

  Our heads turned toward the opening doors. They were the only body parts we could move.

  “Excuse us,” Mom said.

  “Gomennasai,” I said.

  “Gomennasai,” Mom said.

  We made it six inches closer to the doors before they closed.

  A few passengers got off at the next stop, replaced immediately by new passengers. My appointment drew closer, the hospital getting farther away.

  Four stops too late, we were able to squeeze our way off the train. On the bright side, the train hadn’t seemed to go far between stops. On the dim side, we couldn’t tell, after reaching the street, which direction the train had taken us.