Breath & Shadow
A Journal of Disability Culture and Literature
By Timothy W. Allen
“There sure is a lot of scar tissue in there,” the ophthalmologist said, peering through my pupils while shining the brightest light imaginable into my eyes. But he was a man of few words, and he said little else, beyond occasionally asking:
“And which is better?” while rotating various diopters as I stared blankly at the barely visible Snellen Chart, projected on the wall from an unknown source. And then, about fifteen minutes into this:
“Well, you’re not legally blind,” he deadpanned. I didn’t respond. This struck me as an odd remark; I had never really thought about the issue.
“To qualify as being legally blind,” he continued, by now the tone in his voice acquiring quite an edge. It reminded me, in fact, of that of the prosecutor’s, the one time in my life I had been in court.
“Your vision must be worse than 20/200 in your best eye, with the strongest corrective lenses, or you must have a field of vision less than 20 degrees. And you don’t satisfy either of these.”
I hadn’t really listened to anything he said after his remark about the scar tissue, though. Memories of the surgeries, some weeks before, were trespassing into my consciousness, whatever mechanism keeping them at bay had but a hair trigger. I had mastered the art of deflecting them most of the time, but sometimes, as now, it was a losing battle. They were coming full force. The blinding overhead lights, the rails of the operating table lowered, the injection of the local anesthetic into the soft tissue just below each eye. And then, the whir of the drill, nearing my face. If not for the midazolam trickling into the veins of my left forearm, leaving me woozy but awake, I would have been absolutely terrified. As it was, “He is going to bore holes into my eyeballs,” flashed through my mind, and I almost smiled at the thought. But then, as the bit tore into my right eye, I flinched.
“Can you feel that?” asked a voice.
“It hurts,” I got out.
“We’ll turn up the happy juice,” the voice, apparently that of the anesthesiologist, said, and he increased the flow of the midazolam. The voices became garbled, all sensations, Kandinsky-esque. I could feel the robotic arms jabbing and snipping occasionally, but I didn’t really care.
When I finally came out of this, I could see nothing, except a surprisingly light shade of grey, and a few vague blobs. It only then occurred to me that I should have asked a few more questions about these procedures before they had started. It had all been so rushed, though. Two days before, out of the blue, my vision had become distorted, and even more so as the day progressed. Late yesterday afternoon, the shocking diagnosis: “Your retinas are sloughing off, like peeling paint. You need immediate surgery, or you will be left totally blind.” And now, today, I had gotten to the surgery center at 6:15 am, I could see to walk in, sit briefly in the waiting room, even sign the papers. The surgery was scheduled for 8:00, the first slot of the day. I never really spoke to the surgeon, I had no idea what to expect, I was through it now, I could see nothing. “Is this what it’s going to be like? Did something go wrong? What is going on?” I was thinking.
“You probably can’t see much right now,” a female voice from nowhere said, as if she were reading my thoughts, “because you have gas bubbles injected into your eyes, to keep the retinas in place until they can heal. The gas will gradually be absorbed into the tissues, and your vision will return.”
“All of it?” I asked, humbly.
“It’s hard to tell how much vision you will have. Everyone’s case is different. In the meantime, you need to keep your face at an angle, horizontally with the floor, so the gas bubbles keep the retinas in place. When you get home, you’ll have to lie on your stomach, with your face down, for seven to ten days.”
“Holy crap,” I said, “how am I going to do that? And, besides, I can’t see a thing.”
“You'll manage,” she said.
I did go home and lie prone, alternating between the couch and the bed, for seven days, getting up only to fumble into the bathroom, and eating while crouching on the edge of the sofa, leaning forward, face toward the floor. I drank a glass of red Bordeaux through a straw, mon Dieu!, being unable to manage a regular wine glass. I also had an insidious migraine almost the entire time. I truly wouldn’t wish this experience on my worst enemy. Some of my vision did begin to return, however, at the very top of my visual field at first, then gradually, farther down, and on the left. Yet, I could read only the headline in the newspaper, and even that required squinting and blinking repeatedly. At the follow-up visit at the retinologist’s office, he explained how he had sewn the retinas back together, much like darning a sock, as he put it. Some parts of the retinal tissue looked reasonably good, other parts had seams in them, though. This would definitely affect my vision, but it was uncertain how much. For a few weeks, I was fairly optimistic, but the improvement quickly plateaued out. One final visit to the retinologist confirmed that where I was was the new normal.
"You should see your ophthalmologist," he suggested, "corrective lenses may help, to some extent."
“You’re going to have a hard time qualifying for disability,” the ophthalmologist said, startling me back to the here and now.
“Disability what?” I responded, mechanically.
“It’s going to be hard to convince the folks at Social Security,” he continued, vaguely hostilely, “I’m not going to tell them you’re blind when you’re not, so you can get that idea out of your head.”
“Okay, what? Whoa, what are you talking about?”
“Look, there are people coming in here who are legitimately blind, and I will sign off on them. But, there are others…others who…I can tell you, there are enough people sitting around, collecting Disability, as it is.”
“What makes you think I’m trying to get on Disability?” I cut him off, “I have a good job, and I have no intention of quitting it,” I said, with a firmness in my tone that surprised even me. He seemed taken off guard, and responded as if he were ad-libbing. “Uh, well, uh…okay, uh…I can write you out a prescription. Be sure you get aspheric, high index lenses; I’ll put that right on here. They are expensive, but standard lenses will produce too much distortion to be usable. They won’t do much for your right eye, but the left will be in the 20/180 range. And your usable visual field will be about 40 degrees, laterally, a little less vertically."
"Will I be able to see to read?" I asked.
"To some extent, I think, if the font is large enough," he replied.
So, I guess this really is the new normal. I cannot see up, down, nor to the right. My irregularly shaped visual field feels oddly like wearing a shoe that is too small. And even through this aperture, I have a view of the world as one would get from staring through a grime crudded screen door. I can read large font print, but cannot sustain focus for more than a few words. More strikingly, though, I am a person without a country. I seem to inhabit a strange netherworld; I see too well to qualify as blind, yet too poorly to count as sighted. I don’t mind being ineligible for Disability; I have never sought that designation. I have a decent job a crash course in JAWS (Job Activation With Speech), and some hurried braille lessons, have allowed me to keep, after all. Being denied a tax break by the IRS is a bit more rankling, I must admit. Worst, though, is that I feel much like an undocumented immigrant, not qualifying for any legally recognized status. I trip over curbs, roll my ankles in crevices in sidewalks, occasionally skin my knees on fire hydrants. Yet, if I use a white cane for mobility, I am in violation of the law. The state statute explicitly restricts its use to those who are legally blind. A little research indicates that although the law is not universally enforced, it is so on occasion, and it can be at any time. "Papers, please," can be demanded of anybody, at any time or place, and for any reason, to certify that he or she really is legally blind and not merely visually impaired. So, in effect, I am on the lam. As such, I share kinship and solidarity with undocumented peoples the world over. I reflect on this, from time to time, Jerry Garcia's haunting "What a long, strange trip it's been" creeping around the periphery of my consciousness.
Allen is trained as an academic philosopher. A recently acquired
visual impairment, however, has rekindled a dormant interest in
poetry and literature. He lives in the mountains of upstate New York.