“The day of the sun is like the day of a king. It is a promenade in the morning, a sitting on the throne at noon, a pageant in the evening.”
“No object is mysterious. The mystery is your eye.”
My own eyes; what an odd thing. Eyes that were always trouble; never in the game; quasi-reliable in youth; little agents of many beauties; never quite understood, like stray dogs; my suspect eyes…
Since the advent of cataracts in my forties I’d been to half a dozen ophthalmologists all of whom had said “leave them alone”.
I’d grown artfully resigned. The art of losing isn’t hard to master. Besides, I was good at adaptive technology, had a talking computer, a fabulous guide dog, a solid career—what craven impulse might it be to imagine seeing in some fashion?
My friend Dr. Edwin Stone was the first to say it. “Could you handle being able to see something?”
Or maybe he said: “Are you emotionally prepared for sight?”
Perhaps he said: “What if you’re not blind anymore?”
I don’t know why I can’t remember his precise words. A good guess is that I was shocked by the temerity of it. It was an audacious thing, and it also had a ring of impertinence. I didn’t like it. I remember that much.
Still Edwin Stone is the kind of physician who would cut off his own hand before discouraging you. Once talking to a boy who’d been diagnosed with an inherited eye disease his young patient asked a question: “Dr. Stone am I going to go blind?”
And Ed said: “Over my dead body.”
It was the subject of eye doctors that had first brought us together. After reading my memoir Planet of the Blind Ed called me up and suggested we meet. He invited me to visit his ophthalmological genetic testing lab in Iowa City. After a tour we sat down and talked about ophthalmologists. He asked me what I thought of the field.
“Well if you talk to blind people a lot,” I said, “they invariably report that their eye doctor was a kind of hopeless person—hopeless in human terms—that is, you know they can’t cure you so they say something like: ‘Sorry but there’s nothing more we can do for you.’ -–and that’s it. Then they push you out the door.”
Ed is one of those individuals who listens with full attention. He’s tall, six feet seven inches and as he nods his upper torso also nods.
“That’s the killer phrase,” he said. “I’m sorry, there’s nothing more we can do for you.”
“And you know what happens next?” he said.
“That patient who now is convinced his life is over goes back to the family farm, moves into a shed out back someplace with a mountain of canned beans and disappears, never to return again for ophthalmological care. Those patients vanish from the face of the earth.”
Ed explained that tens of thousands of visually impaired people have dropped off the grid because their eye doctors told them to go away.
“And this is a two-fold problem,” he said. “We might be able to help those people nowadays and they don’t know it. And on top of that, they’re not getting good eye care. Impaired eyes need care too, perhaps more so. And there’s going to come a time quite soon when we can cure certain blinding eye diseases and the people who will most benefit are missing.”
I thought about a blind friend in New York who has grinding headaches but who never goes to the doctor. I thought about a friend with a childhood blinding eye disease, a genetic condition who told me once over dinner that he’d rather go to a proctologist than an eye doctor. “The proctologist has to have manners,” he’d said.
I thought about a woman who’s so angry about her blindness that she can’t hold a job.
And I also thought about the fact that people with disabilities don’t like the medical model of disability, a model that suggests that a person’s validity only derives from being cured. In Planet of the Blind I said “On the planet of the blind no one needs to be cured.” The point is clear: disability is not a subset of medicine; doctor’s can’t define us; nor should they be allowed to do so.
When I’d written that sentence I was certain that I couldn’t be made to see in any significant way. I was also sure that talking about it would be inimical to my hard earned place and the world of disability rights advocates. Wasn’t talking about a cure for my own blindness a tawdry thing?
If people are accorded value only by means of “the cure” then doesn’t this in turn call for a resistance? A militancy?
People with disabilities are all too often viewed by doctors and the general public as “failed patients”. The fallout from this picture is in fact a dreadful thing. Failure isn’t simply medical failure—it becomes a symbolic co-efficient. In this view a person with a disability is more than a medical failure; he or she is redolent with failure; a kind of Typhoid Mary of damaged physicality and even of spirit. How else to explain the fact that some 70 per cent of the disabled remain unemployed?
“Yes,” I thought. “Most assuredly the subject of curing disability is a slippery slope.”
But I made a mental note, saying to myself: “Nevertheless good eye care for the blind and a new generation of mindful, compassionate doctors who can provide it—these are good developments.”
After that I shelved the matter. My own eyes weren’t in the running for a cure and I was busy writing a book about traveling blind and hearing the ambient sounds in various landscapes.
One day in Chicago at a conference I tried talking about doctors with two friends who are both disability rights activists and both living with disabilities. “What if we could get beyond the idea that all physicians see people with disabilities merely as defective people in need of cures? And what if we could conceive of cures as simply part of a whole vision of the human being? Whether you’re curable or not, you’re equally valid?” I asked.
I was eating some kind of sushi, something salty and of a doubtful consistency.
My friends were indignant. Talking of progressive physicians was akin to apostasy.
We quickly plunged into a conversation driven by cultural theory. My activist pals, both academics in disability studies had no use for medicine. And worse yet I could see that they thought I was some kind of quisling; a traitor to the collective and aggrieved view that medical practice has sublimated human beings with physical differences into damaged social categories—in their eyes all medicine was Brahmin and suspect.
I fled the sushi restaurant with some jokes about a potential TV series called “Spank the Doctor” and my guide dog and I ran for cover.
Jokes aside I saw that Edwin Stone was right. People with disabilities need better health care and they need to come back to see their doctors. I was wandering Michigan avenue and talking to myself. Doctors need to be educated about the history of disabilities. And while we’re entering the age of “post-molecular” medicine when physicians can pinpoint a single damaged gene as the cause of an eye disease, when the prospect of gene modification therapy is upon us, well, isn’t this the time fo
r a radical reassessment of
what health is? Another way to see this is that we might be able to give someone partial sight and while it may not be the vision of an athlete it would be a delivery system for beauty. Of course I thought of John Keats: Beauty is truth, truth beauty,–that is allYe know on earth, and all ye need to know.”
Ed and I had talked about the fact that many ophthalmologists willfully overlook patients who at best can only be given partial vision. We’d talked about the poetry of seeing things up close.
By the age of forty my eyes were done with residual seeing. The cataracts had come to stay. Over a five year period I visited several doctors who told me that operating would be dangerous given the fragility of my retinas. So I lived with the growing cloudiness. By way of analogy I thought of this as ice coming to a pond.
Didn’t I have stamina? I’d always been legally blind. The stone idol of entire blindness could be mine. I imagined carrying it inside my house. A stone idol set before the window.
Obviously getting some vision back was too improbable to be entertained. And maybe the thought was wrong for political reasons?
I remembered Dorothy Thompson’s observation: “Disillusion comes only to the illusioned. One cannot be disillusioned of what one never put faith in.”
Plus I’d seen too many movies and read too much history.
I remembered Rod Serling’s short lived TV series “Night Gallery” with Joan Crawford as the horrid socialite who undergoes an operation to have her sight restored. And of course she was so terrible that the episode functioned as a morality play—her restored vision lasted just a few hours only to fade as the sun came up.
I recalled Mike May’s story in the book “Crashing Through”. May was (and is) a very successful blind executive, inventor, athlete, and business man who had stem cell implantation and surgery, regained some sight and found the entire experience disarming, unpleasant, even a kind of disavowal of his extraordinary success as a person with a visual disability.
Monsters be there.
I thought of a friend who underwent botched eye surgery and who wound up with two plastic eyes. Eyes that he regularly dropped on the floor.
I remembered Oliver Sack’s portrait of a blind man in his book “An Anthropologist on Mars”—it was yet another story of a visually impaired person who found restored sight to be disturbing. Later they made a ghastly movie, “At First Sight” based in part on this story. How I’d hated that film!
Monsters be there.
And once, about fifteen years ago I’d met Sacks’ blind man—we were on a TV show together. Virgil had truly hated being able to see; had found it so confusing he really couldn’t function. Yes, Sacks had written a solid lay person’s account of how the visual areas of the brain may indeed lose the ability to process visual information. Virgil was living proof.
Who would want to be sea sick?
Sitting in the waiting room of the University of Iowa’s Ophthalmology clinic I could imagine Virgil’s experience, bandages off, the room presenting itself as a raw psychedelic infusion; something horrible; faces awry, but permanently so, a Picasso painting thrusting portentously at you; and all the while clutching your head and wanting to throw up. Yes, monsters be there.
In fact it seemed to me there were so many stories of blind people undergoing questionable surgery that the whole matter was a kind of inspirited medical mania.
It’s a Victorian story: the sentimentalized narrative of medicine as one of the gods of progress, a tale so attractive it still floods the tabloid news media with its language of miracles. And nothing so captures the imagination as the headline: “Blind Man Sees Again”.
Virgil’s story reminded me that there are real lives in the balance. Mike May’s experience suggested that medicine can get ahead of what passes for the thing we call quality of life.
But wanting to see is not merely a lifestyle issue. It is a matter of philosophy. At least it was for me. I saw that this wasn’t about being a token of success for the surgeon’s art and that it wasn’t about advertising a kinder, gentler relationship between medicine and people with disabilities. I knew I believed in the latter thing but was less sure of my comfort level with becoming a patient; darkly uncertain of having a symbolic role in a medical narrative of any kind.
Still there I was. The movement inside me was toward light.
I thought of James Merrill’s epic poem “The Changing Light at Sandover”—Merrill whose poetry could capture light on water, a living light, light of our stricken or giddy consciousness itself—whatever that might mean.
I saw that I wanted to weep in the light.
Saw this wasn’t about cultural theories or advertising or social production.
I was thinking these things while sitting in an ordinary waiting room, surrounded by people from all walks of life; some old, others still learning to walk; there were nervous parents, frightened relatives; farmers; people who loved books; and those who desperately needed to keep their sight because they were truck drivers; heavy machinery operators; athletes…
I thought of a prose poem by James Wright entitled “The Secret of Light”, saw how I wanted to live inside that poem. Wright is in Verona in Italy and he begins:
I am sitting contented and alone in a little park near the Palazzo Scaligere in Verona, glimpsing the mists of early autumn as they shift and fade among the pines and city battlements on the hills above the river Adige.
Perhaps I’d never seen mists shifting and fading among pines. But as a kid I could lie down in the midst of trees and see light move from stone to the red floor of the world; watch it take its imperceptible way.
I’d been lucky in my adult years, I could hold entire poems in my head. Wright continues:
The river has recovered from this morning’s rainfall. It is now restoring to its shapely body its own secret light, a color of faintly cloudy green and pearl.
Directly in front of my bench, perhaps thirty yards away from me, there is a startling woman. Her hair is black as the inmost secret of light in a perfectly cut diamond, a perilous black, a secret light that must have been studied for many years before the anxious and disciplined craftsman could achieve the necessary balance between courage and skill to stroke the strange stone and take the one chance he would ever have to bring that secret to light.
Seated in the ophthalmology clinic I knew I was no longer content to read other’s on the splendors and mysteries of light. I felt a wheel, a very delicate one, perhaps a wheel of glass, some trinket for the child of an emperor, felt it turning where memory and desire co-mingle. I saw I could live with an indeterminate success if we went ahead with surgery.
Wright concludes his poem with the lines:
It is all right with me to know that my life is only one life. I feel like the light of the river Adige.
By this time, we are both an open secret.
From The Day of the Sun a memoir in progress by Stephen Kuusisto