1. Seeing Stars There are as many ways of being blind as there are of being tall, or sick, or hot. But the popular view has always conceived of blindness as a totality. The blind bards wandering the countrysides of ancient Japan, China, or Europe, the blind housed in asylums in the Middle Ages, all the pupils in all the schools for the blind from the Enlightenment onward, blind beggars and lawyers, war veterans and toddlers-in the eyes of history, as well as those of most of their contemporaries, they all saw nothing. Modern dictionaries still subscribe to this sense: blindness is the antonym of vision, and connotes a destitution of sight. What else could it mean? Despite the poetic impulse to equate blindness with darkness, it''s rarely experienced as a black veil draped over the world. Only around 15 percent of blind people have no light perception whatsoever. Most see something, even if it isn''t very useful, by sighted standards: a blurry view of their periphery, with nothing in the middle, or the inverse-the world seen through a buttonhole.
For some, scenes come through in a dim haze; for others, light produces a shower of excruciatingly bright needles. Even those with no light perception at all have little use for the popular image of blindness as darkness: the brain cut off from visual stimulus can still produce washes of brilliant color and shape. One blind man, whose optic nerve-the connection between the eyes and the brain-had been severed, described seeing a continuously swirling (and distracting) "visual tinnitus." The Argentine writer Jorge Luis Borges, decades into his blindness, still saw color, which sometimes disturbed him: "I, who was accustomed to sleeping in total darkness," he said, was bothered for a long time at having to sleep in this world of mist, in the greenish or bluish mist, vaguely luminous, which is the world of the blind. I wanted to lie down in darkness. The arrival or encroachment of blindness gives rise to a similarly dazzling range of experiences, an efflorescence of blind varietals. There are those born blind, with no visual memories, whose brains-including the visual cortices-develop using four (or fewer) senses to construct their view of the world. Those who become blind in early childhood often retain visual memories that can contribute to an intuitive understanding of visual concepts.
The late-blinded may have the most cognitive work to do, forced to relearn basic skills like orientation and information-gathering through new senses, long after their brains'' developmental plasticity has hardened. Some late-blinded adults consciously struggle to preserve their storehouses of mental images, like art conservators touching up old and fading masterpieces. People are blinded by their spouses or strangers, by acts of war or sports injuries, by industrial accidents and bad decisions, malnutrition and infection, genetic inheritances and spontaneous mutations. It''s disingenuous to argue that blindness doesn''t have a transformative impact on a person''s life, but in every case, blindness is only part of the story. The life of a blind person is never fully (or even predominantly) defined by their blindness. Some (like Borges, and me) lose their sight gradually. I first noticed something wrong with my eyes in New Mexico. My mom and her boyfriend, Jim, had developed a romantic idea about the American Southwest, where they saw themselves riding horses and motorcycles in the high desert, a more genre-appropriate backdrop to their relationship than the strip malls of suburban New York.
The summer before I entered fifth grade, we moved to a house about twenty minutes from downtown Santa Fe. I entered my new elementary school awkwardly, sitting on a utility box at recess, reading The Hobbit in the Hawaiian shirt and shorts I wore year-round. I made friends, eventually, and by middle school I had found my place in a crew of early-nineties southwestern prep-school bohemians, most of them a few years older than I was. I''d follow them into the hills, which were sandy and dotted with piñon trees and juniper bushes, and we''d smoke pot out of wooden pipes we''d bought from long-haired guys at the farmers'' market. If I was too young to be smoking pot, I was definitely too young to be taking psychedelics, but I did that, too, keeping up with this group of brilliant and occasionally troubled weirdos in backward English driving caps and Stüssy jeans. We all hung out at Hank''s house, because Hank''s mom was maximally permissive, getting stoned with us and letting Hank decorate his room like the set for a post-punk staging of Alice in Wonderland. It was on the hill behind Hank''s house that my journey toward blindness really began. I soon noticed that my friends were better at navigating those darkened hillsides than I was.
At night, if I wasn''t following directly behind someone, or paying painstaking attention, I would walk directly into a piñon tree. My friends laughed and marveled at how high I must have been, and I started to pursue that role: the bloodshot slo-mo wiseacre. The night sky was already perforated, splintered, and fractured, the constellations animated by hallucinogens; how could I be sure that there was anything wrong with my eyes while I was rattling the doors of perception so hard? At other times, the night blindness was more difficult to brush off. At the movies, I was increasingly unwilling to get out of my seat until the lights came up-the prospect of picking my way through a dark, undulating forest of knees and legs in search of the exit was embarrassing, a feeling that was compounded by the confusion I felt about why I seemed to be the only person experiencing it. When I mentioned this new impediment to my mom, she dismissed it: everyone has "night blindness," she said-it''s dark at night! Eventually, I used some pre-Google search engines to diagnose myself. (My dad, who had moved to the Bay Area when we''d moved to New Mexico, had bought me a modem.) Searching for "night blindness" on the early web, I found information about eye diseases on a website whose name I''ve forgotten-the lean, lost grandfather of WebMD. Your eyes, this ancient website told me, have two types of cells: rods and cones.
These make up the retina. The cones allow you to see color and account for central vision. The rods give you peripheral vision and are more light-sensitive; they allow you to see in the dark. Retinitis pigmentosa encompasses a family of inherited eye diseases that gradually kill off the rods. As a result, RP usually appears early in life as mild night blindness, before manifesting as slowly narrowing tunnel vision during the day. (One medical source I found later summarized my story with eerie precision: "Mild night blindness is often ignored by the patients and becomes apparent in the teen age, at evening parties.") RP concludes, usually in middle age, with a flourish: complete functional blindness. By this time, I was attending a boarding school in Ojai with the children of Montana ranch families and California Central Coast citrus barons.
(My mom had begun getting more work as a screenwriter, so we had moved to Santa Barbara.) Night blindness had gone from an ambiguous inconvenience to a fact of life. I assumed I had RP, or something like it, but didn''t discuss it with anyone aside from occasionally complaining about it to my mom. When other students snuck into the woods at night to smoke pot, I stayed in the dorm, reading or hanging out with the art-damaged pocket of anti-rancher resistance. I frequently worried that I''d permanently destroyed my intellectual capacity by eating so many psychedelics back in New Mexico; my peripheral vision was filled with flashers and floaters and spinning phantom ceiling fans, visual reminders of the fact that I had ruined a perfectly good brain. It wasn''t until I''d returned home after my freshman year in college that my mom decided that I''d been complaining about my eyes long enough that I should get them checked out by a specialist. She got me an appointment at an eye clinic at UCLA, where I submitted to a long regimen of tests, including an ERG, which involves numbing your eyes and then attaching electrodes to your eyeballs to measure the amount of electricity your retinas are putting out in response to light. (It''s like testing the charge on a battery, but the battery is part of your face.
) When I finally met with the doctor, a soft mustachioed man named Dr. Heckenlively, he confirmed what I''d gleaned from Wikipedia''s great- uncle years earlier: I had "classic RP." I could probably expect to maintain good vision during the day through my twenties and thirties. The night blindness would gradually become more severe, and my peripheral vision would erode. As I approached middle age, the degeneration would sharply accelerate. There is no treatment, he told me, but science is making great progress, so by the time I was really blind, in twenty or thirty years, there would hopefully be a cure. In the meantime, there were some vitamins I could take to try to prolong my useful vision. Did I smoke? Yes, of course I smoked.
I also had a radio show on the college station called A Thousand Frowzy Steams . Well, the doctor told me, I''d need to quit immediately-cigarettes are terrible for ocular health. Can you see stars? he asked. This was something I''d already noticed: starlight had become too dim for me to register. It was also the detail that brought it all home for my mom. She sat up straight: "You can''t see stars!" I don''t remember sharing my mom''s dismay. Part of this must have had to do with the fact that I''d already successfully diagnosed myself, and I felt validated by the doctor''s confirmation of what I''d pieced together from the web.