Thursday, March 10, 2005
Lacking Clarity 1
Lacking Clarity by Elizabeth Burns
I have often imagined a conversation with one of my former peers in junior high or high school, hearing an astonished voice ask, "What in the world happened to you.' and answering thus: "The thing that was happening all my life. How does it happen that a person, impaired by a lifelong, insidious process, creates a false sense of security in his or her mind and brings only the shadow of terror to the future rather than light of aspiration? For most of my youth, clear to my late twenties, I lived as though a shadow covered half to most of my face. The people who loved me best did not really know me, and it was beyond my verbal power to tell them about my visual perspective and its meaning.
Visual impairment is the price of life. In 1962, an infant weighing three pounds, three ounces was considered more fit for the grave than for the cradle. Premature infants born then faced the same obstacles to life that they do now, but the existing technology was less adequate to stabilizing their condition, and the procedures for handling and caring for the fragile children were timid and halting. Indeed, the first people to learn about caring for premature infants were those exhibiting them as freaks; they were a kind of humanity humans' had trouble accepting. At birth, I was sixteen inches long. Most of the three pounds, three ounces was in my huge head; my limbs were like twigs. My parents would come and visit me, but they could not touch me; they stared into the dark incubator at a cylindrical cell in which I lived for nine weeks. I suffered from acute and life threatening respiratory distress, and the doctors decided to give me pure oxygen. There is a succinct explanation of how oxygen helps cause visual impairment in Steve Sternberg's short article in the April 20, 1996 edition of Science News. "The link between oxygen and blindness was recognized in the 1940s. At that time, doctors thought excess oxygen was the only culprit... Excess oxygen halts the growth of blood vessels in the eye. As preemies are weaned from the oxygen, cells in the retina react by issuing a chemical that triggers rapid blood vessel growth. The new, weak- walled vessels leak blood, prying the retina from its bed. This causes severe loss of vision in 60 percent of the smallest preemies." "You were very lucky. Just one more hit off that oxygen and you would have come out of the incubator totally blind," my eye doctor once told me.
There were two white gashes, one on the center of each rust-colored retina. These would not have been a problem if they had stayed small. My retinas were, and are, unstable; the deadening of the tissue spread because the retinopathic gene in my blood started to act. My parents deny this, but my eye doctor has told me, "With as much deterioration as I see here, and the tremendous rate at which it happens, I can only conclude that you are carrying an active retinopathic gene. Somewhere in your family, maybe two or three generations back, one of them was blind. The blind people are there." The tiny gashes have since turned into white clouds.I did not walk until my eighteenth month, and I never crawled or rolled anywhere. "You were wonderful that way," my mother said. "I could put you down, and there you'd stay. It kept me from worrying about you running off or destroying things." But she was worried. "The fact that you were so far behind schedule on your development pointed to a handicapping condition. But it was impossible to know what the problem was." My first eye examination was given in about my second year. The doctor warned that there was trouble with my eyes, and from what he could gather, more trouble ahead. Examining me was difficult because I was barely verbal. My father, feeling dissatisfied with the examination's grim results, sought a second opinion. The other examiner told him that there was nothing to worry about, I was normal. My father settled on that decision; the case, in his mind, was closed.
But my mother and father never lived behind my eyes. That precious space, the seat of conscious individual perspective, and the crux of a human relationship to the world and divinity, was where I was hit and hurt. At first, I saw two worlds, one identical to the other. Focusing a few details here and there, I would try to tune one world out and pull the other (usually the left) close. That was coping, not compensation. Blinking hard and shaking my head, I tried to make duplicity go away. In the foreground was a forest of details, sight was the act of focusing the necessary ones, leaving the rest. My peripheral vision was impoverished, and I was prone to accidents with furniture. I also developed nearsightedness which, until a few years ago, could be corrected. But the underlying multiplicity of vision remained.
Later, as a young adolescent, I felt that I had compensated well for my quiet problem, and that I was on the way to a more or less normal life. I had learned, at eleven, to ride a bike and a horse. I took lessons in hunt seat and could even clear obstacles on horseback. But, in the summer of my twelfth year, six months after I had acquired a ten-speed bike, my two worlds turned into four. Two in each eye, I observed one morning. How had it happened? What was it leading to? These questions frightened me, so I retreated into thoughts of the day: it was sunny, hot. I believed I would walk. I put the bike away, new, speedy, and efficient as it was. I never rode it again, never rode a horse again. The time for those pursuits had passed, to fade into other desires, curiosities. But the issue of driving forced me to look at my vision. I took the Driver's Education course, and turned sixteen as it progressed. My simulator scores were bad, but I still made "Bs" in the class. I got a white slip, but never a driver's license. I avoided driving because my vision had multiplied again. I was seeing about eight views in front of my eyes, eight worlds, and working much harder to focus details. It amazed me that while there was so much light around me that I could perceive, there was no dependable means of focusing it. Even when I had what I thought was a visual "toehold," it would vanish suddenly and I would search rather than see. The following summer, I stood in front of my window and thought about what this conscious struggle meant to me. Would it just go on and on? One more break and what would I do? How can it be explained? What can I say? My sanity was already in question; I had been taken to numerous psychologists, taken the Rorschach test more times than I could count. There was always the question: "What is wrong with Elizabeth?" In my dreams, I stood in a room beside my family, but never with them. When I thought of my future, I felt like I was standing at the top of a cliff, feeling the pressure of a hand on my back ready to push any second. I was consciously appraising reality for the first time in my life. And I cried hard about it. My brother found me and asked me what was the matter. I told him that I was lonely, nothing more.
At twelve, I could jaywalk across four-lane streets, and navigate for miles through the linear design of Salt Lake City on foot, reading street signs. But at the same time I was doing those things, there were certain cross-walks where I could not keep track of all the movement that was going on; much peripheral vision was necessary to cross these intersections. I had much trouble counting money accurately; it made me self- conscious that I couldn't see coins and the faces of dollars very easily. I had not yet learned to organize the money or recognize it by touch. I compensated by knowing exactly what I had, and keeping the haul, both money and purchases, simple. With these tiny measures, I bargained with my condition, all the while thinking the last break had come. How could eight become sixteen? Because I had never been formally diagnosed with the retinopathic condition (even though there was evidence of it), I functioned precariously as a visually impaired person in the sighted world without compensatory technology or training. Even distant acquaintances knew that I was different, but not really how I differed from them. My intelligence was appreciated, and my perspective was remarked upon as unique. How would I say it? I see more than one of you, this room, this object. Could anyone understand that? I was articulate, but not that articulate.Not long after I was married, my husband wanted me to acquire a driver's license and a car. I tried to explain my problem to him, and it was hard for him to comprehend. After I had my first child, I was examined by another doctor and formally diagnosed with retinitis pigmentosa. I was not informed that I was going blind, but my husband was. I had about ten years of stable vision, perhaps. Over the next few years, my husband would bring up the subject of my vision now and then, with the comment that eventually, I would be blind. "But that happens to most very old people any way," I said. "Yes, but it will likely happen to you earlier." I still balked at that. I could not imagine another life, a blind life, for me. The mold into which I had poured myself hardened me too much to accept reality and change.
One night, when I was twenty-five, I was sitting and writing out the events of the day as I usually did. I had been feeling bitter and guilty at myself for about a year. My life seemed hollow. Throughout my youth, I was told that there was great promise in my mind. Counselors, teachers, and other students had written in my yearbook of it, but I was not able to deliver on it. Libra twitches and whispers, consisting of hacked-off implements, the remnants of Scorpio's snapping, once-potent might. I felt like that, dismembered and incapacitated. When would the emptiness end? And then, suddenly, in my kitchen that night, I knew something I did not have to learn. All my life, I had lived as a shadowy, hollow person, allowing emptiness to exist in my life without filling it with awareness and letting myself be guided by the truth. There came the intuitive realization that the truth would not destroy me, and I saw, in my mind, distinctly, the possibility that I could live a life that was truer to my capacities. I had not accepted my disorder or started rehabilitation, but I had taken an important step toward doing so. I put away my notebooks, telling myself that the energy of anger and frustration alone, rather than inspiration, had created their bounty. I sought another wellspring for my thoughts, and I would wait all my life if necessary to find it.There was a long period of stability that lasted until I was about twen-w-eight years old. I learned to knit Norwegian sweaters on circular needles and to do thread crochet later. My husband did not feel comfortable with my taking up these crafts, but they were necessary, I felt. There was a vein in my soul that I had to open bit by bit. My needlework, which had started when I was seven, and continues today, is part of seeking the other wellspring. I crocheted with thread for about two years before quitting. I made mistakes that disjointed the work. After having to pull out a piece so many times that no progress was being visible over a period of days, I decided to stop. That was in 1992, and it tore me; I cried. And then I couldn't stop grieving. Many times had I stared at the light with the wish: "Exist in my mind, somehow." Hardly two weeks would pass without a breakdown. And it went on until about a year after my rehabil. itation started.
Another significant warning of my collapse happened when I was about twenty.nine. We were in the automobile on a two-lane highway. A car was coming toward us in the left hand lane. Seeing as I do, I perceived many cars, many roads, not just one. And each one of these images approached at a different angle. I focused on one that seemed to be coming right for us, head on. As it approached and passed, I drew a ragged breath, one that I thought would be my last. The incident frightened all of us. My husband wanted me to at last accept what was happening consciously and change my life. He had noticed the effects of the visual collapse he had been told to look for: hypersensitivity to light, particularly at night, and a loss of eye contact between us. He told me that my impairment was growing more severe, and that it was necessary for me to think of myself as blind. I responded to his sense of my situation with great anger. But there was pain behind my eyes and in my head, and I noticed a marked change: my reliance on hearing. I also had some chastening accidents with the well built doorframes of my 170-year-old schoolhouse, which injured my jaws and forehead. I had to reach out to the doorframe and carefully feel my way through it. I had strong hearing and touch, but without training, I was scraping and cutting my hands on aluminum can lids, glass, and knives. In reflecting on these situations, I always directed my mind forward to the next time they'd arise. It was futile trying to remember how I was wounded. I would go out to the mail. box, about a 200-yard walk, and when I came back into the relative dimness of my kitchen, my eyes would fail. For several seconds, I would stand in blackness, unmoving, holding back horror and uncertainty about where I was. My hallucinatory symptoms, which had intruded repeatedly on my focusing since childhood, became more vivid and numerous. I often saw purple smoke and an intense and energetic explosion superimposed on the confusion. From my childhood, I had seen a large bright yellow ring with a shimmering blue-gray center; sometimes I could barely perceive the ring, but at other times it glowed above sunlight. Later, I saw an oval made of Christmas lights set close together, all cheery green, yellow, and red. This is my most common effect; I see it many times in a day. Large shimmering haloes surrounded streetlights and headlights at night. These are key symptoms of retinopathic disorders. In the summer of 1993, my headaches became very severe and I told my husband to take me to a doctor and get more testing for visual impairment with a form from the Department for the Visually Handicapped.I had been tested in 1991 for visual impairment, but there was one crucial component missing from the test that may have facilitated my declaration of blindness then. Visual capacity is definitively measured in two ways: there is the acuity of vision, how much light the retina receives and processes, and the capacity to focus vision with maximum peripheral vision. A person with one-tenth the normal visual capacity in the better eye, by either of these measures, is considered legally blind. I had been tested for acuity, and that aspect of my vision is very strong. But never for peripheral or side vision. A person who has twenty degrees or less of side vision is considered legally blind. When I was finally given the field test, the result was less than ten degrees of peripheral vision in both eyes. So it is possible to be able to read a little and be legally blind. It is possible to perceive the difference between day and night, movement and stillness, and yet still be impaired enough to need rehabilitation. And this was a revelation, an earthquake.
Earlier in my life, I could walk very fast, and check my face in every mirror. I move much more slowly now and I use every pause in my movement to listen to what is around me. I am less afraid of the future; my sense of security has been altered. I know now that the world is known in small increments and that my vision, what remains of it, will depart in small increments, too. I feel less attached to the competitive rush of the social world, and less humiliated when I am wrong. I have become acquainted with those small increments of my self: the part of me which can't stop crying, the other which can't stop being angry at the lack of connection. And then there is the one capable of shaking hands with them all at once, the mysterious aspect of myself. To throw my soul into that aspect is to move beyond horror and disgust, to be good at this very strange game.