by David Hamilton
From the Editor: Sometimes optimistic blind people are dismissed by those, both sighted and blind, who have little experience of blindness, as Pollyannaish or out of touch with reality. If we express contentment with playing the hand fate has dealt us, even worse if we dare to laugh at our difficulties and refuse to rail against them, people often dismiss us as unworldly or unbalanced. Surely we would all agree that being forced to adjust to blindness late in life is not easy. Old habits die hard, and establishing new ways of doing things becomes more difficult the older one is when the process begins.
It is refreshing, therefore, to read the following article written by David Hamilton, a member of the NFB of New Mexico. It shimmers with good humor and common sense. I don’t know how someone dealing personally with macular degeneration would react to his analysis of what it is like to deal with blindness for the first time, but I do know that it is healthy and constructive. The article first appeared in the May 30, 2001, Albuquerque Tribune. It is reprinted here with permission. Here it is:
It was some time in the early spring of 1994 that I discovered something wrong with my eyes. I had driven to San Antonio, Texas, to deliver a paper at the Southwestern Social Science annual meeting. I am one of those people who like to drive. And although my friends remonstrated with me and insisted on the superiority of air travel, I persisted in driving—especially in the spring, when the bluebonnets are still visible in south Texas. Besides, I had a new Ford Ranger pickup.
On the trip my vision seemed a bit fuzzy, so I resorted to very scientific testing by closing each eye in turn. When I closed my right eye, there was a large blank space in the center of my left eye’s vision. Ah, I thought—cataracts.
On returning home, I went to Lovelace and told the doctors I had cataracts, or at least one, and needed them, or it, removed. Lovelace does not take self-diagnosis seriously and put me through my paces in what they then referred to as the eye department.
I was told that I had the beginning of macular degeneration. I did not know what that meant and was reluctant to show my ignorance by asking. Especially so, since I was informed in a manner indicating that everyone else knew what it meant.
At home I told Polly, my wife, about the diagnosis and indicated that I assumed it to be some eye disease, perhaps discovered by somebody named Macular, somewhat in the manner that Parkinson’s disease was named for its discoverer.
Polly, like Lovelace, puts little credibility in my medical diagnostics. She responded rather quickly with, “You fool, you have a macula (spot or stain) in your eye, and it is degenerating!”
Fortunately I did not confirm her general assessment of my analytic capabilities by making some such remark as: Had I known I had one, I would have taken better care of it.
My ignorance on the matter of macular degeneration was one in which I am joined by many others. Even today, when it is much better understood, I run into people who look puzzled when I inform them of my impaired vision.
Macular degeneration, of course, has been a condition of humankind forever, I suppose. But in my youth the term was unheard of, and seniors, who are the best prospects for getting it, just had bad eyes.
As the population ages, however, there are more of us seniors with “bad eyes” and hence more attention on macular degeneration as a major villain. Indeed it is a perfectly respectable failing that afflicts us common folks, as well as eminent persons, such as the late Georgia O’Keefe and the golfer Arnold Palmer. It is something about which there is no reason to be ashamed.
Polly’s niece Debbie is an ophthalmologist who was at the time practicing in North Carolina. Polly put in a call to her about my condition. Debbie asked several questions concerning the state of my degeneracy at that time, such as: Could I still read a newspaper? I could. But she did not indicate that a day would come when I could no longer do that, along with a whole laundry list of other things that demand fairly good vision. She concluded by telling Polly that there was one good thing: I would probably never become completely blind.
While the prognostication was not a totally gloomy one, it was not exactly equivalent to a pronouncement that a suspected cancer is wholly benign. There was something wrong with my eyes, and that something would not get better, only worse.
Initially the problem was one of mild irritation. Lines that should have been straight began increasingly to have the squiggliness of the mirrors in the old-fashioned fun house. But it was still possible to read the newspaper, a favorite and time-consuming pleasure. Book reading was still possible: reading with no more than the usual eye strain.
I could still see the television clearly without sitting sideways and up close. I could still drive safely for myself as well as others. And I could do so without securing a medical certification from my doctor. In short, life was not too different from what it had been before my “cataract discovery.” The later difficulties came on so slowly that I was sure that trouble, if trouble there would be, was a long way off.
Macular degeneration can be either wet or dry. Knowledgeable people would ask early on if my affliction was wet or dry. I did not have a clear idea of just what the terms meant. I did have a notion that one was worse than the other but no idea of which was which.
But in my case, laser surgery was used early on to slow down that wetness in my left eye. Best as I could figure, blood vessels had burst, and the flow of blood, somewhat in the manner of a flooding river, or, perhaps more aptly, a slowly moving glacier, had to be slowed or stopped. This was not necessary or feasible in the dry eye, and for two or three years the right, or dry eye, was doing most of the work.
The aim of the surgery on the left, other than to build dams to stop the flow, was to preserve what peripheral vision I still had in that eye.
My knowledge of all this is minimal. I was born colorblind and know only that I am apparently lacking certain rods and cones in the eyes, and since I am not clear on just what rods and cones are, I am also not sure of what they do and what I miss. I have never engaged in physiognomy, inner or outer. As a colorblind person, I have had to accept the world as I see it. And as a macular degenerate, I have to accept the world as I have come to see it.
I once read that the nineteenth-century English savant, Harriet Martineau, publicly proclaimed that she had finally agreed to accept the universe. Whereupon some contemporary literary pundit supposedly exclaimed, “Ye gads! She had better.” So I accept the universe, imperfect though it may seem.
As things progressed, I searched out what I referred to as “crutches.” I needed some kind of eye prosthesis. For a while I haunted Brookstone in the Coronado Mall. They had a treasure trove of optical aids. Magnification seemed the answer. But these were all temporary devices that the onward glacial march of macular degeneration eventually made obsolete. Back to Brookstone for another temporary fix.
In the meantime I reported to my ophthalmologist, Dr. Graham, at Lovelace for examination about every four months. And after about four laser surgeries on the left eye, my right eye, the dry one, the one doing all the real work, began to tire of the job, and I reached a state of degeneracy in which I could be declared legally blind.
It kind of gave me authenticity, as well as one more income tax deduction. I also lost my license to drive, to the great relief of those near me and to me as well. If others felt safer, so did I.
At this point in the progression, I was referred to Dr. Sue Johnson of Lovelace, who is the low-vision specialist. This is the point at which things have become serious. There is nothing that can be done to reverse things, but there are things that can be done to maximize what sight is left. You learn at this point that you do have other senses, especially hearing and touch and memory.
And there is a cornucopia of devices and services to help make life more livable. By Dr. Johnson, I was referred to the New Mexico Commission for the Blind. I was there two times for conference with those I like to refer to as my caseworkers, first Karen, then Debbie.
To qualify for all of these aids, it is necessary to be below a certain visual acuity, and you need certification from the doctor as to the state of your degeneracy. This I had. That opened up the cornucopia. Life on the blind side need not be so blind. That is what the cornucopia to which I was introduced is all about.
First there is the Talking Books division at the New Mexico State Library. This opens up a full library of fiction and nonfiction literature, book-length and periodical. Every two months you receive an annotated catalog of the latest books that have been put on tape, as well as any new magazines now available. The catalog is also in audio form. It is issued as an annual volume so that you can easily maintain your own catalog file for years back. You simply go through the current catalog on arrival and either call in or mail in the numbers you desire.
Initially I was overly ambitious and overly enthusiastic and received an entire mail tub full of books. The enthusiasm of our mail carrier did not exactly match mine.
But what is more astounding is the four-track tape recorder that comes with all of the initial catalogs. It is portable so that you can take it on trips easily, along with a number of tapes, so that the waits in airport terminals need not be so interminable. And when all of this arrives in the mail the first time, it’s like Christmas. You don’t pay!
Second, there is NEWSLINE® for the Blind. The usual certification and registration are essential. Having provided it, you are supplied with your own secret number that is usable from your home phone. Then it is possible to have several New Mexico daily, weekly, and monthly periodicals read over the phone.
Third, there is directory assistance. This too requires that certification from the doctor be given to the phone company. It works just as before. After giving you the number, they indicate that for an additional 35 cents you can be connected immediately if you merely “press 1 now”—which, of course, you do immediately, because you don’t have to pay.
But perhaps the greatest improvement in this new way of life is closed-circuit television. The name immediately conjures up some awkward apparatus to be attached to your television. No such thing. It is a wholly separate and integral machine that somewhat resembles a micro-fiche in the town library. Somewhere in the overhead monitor is a camera that photographs and projects to the monitor the material that is on the movable plate below. With this it is possible to magnify items on the plate as much as twenty-four times, to put it in black on white or white on black, and even to have it in color—a matter that did not interest me since I was already colorblind.
This one, unlike the others, is not free. It represents that Christmas gift you bestowed on yourself when shopping for others. Color was another $1,000, which does seem an extravagance to a colorblind person.
With this apparatus it is possible to read any printed matter you can get onto the plate, which includes magazines, books, newspapers properly folded, and the instructions on the plastic bottle containing lawn fungicide. How do I know? I’ve done it all. Unfortunately, you can write checks as well.
I also have an oversized computer monitor that magnifies everything so that I must resort to a hand magnifier less frequently. With all these aids life on the blind side is not the end of life. It is a new way of getting on.
Sometimes friends ask me what I see, to which I always respond that I see less than I would like to see, but more than they think I see. I suppose that I see everything that I did before, only it all comes through a kind of gauze filter.
One day this past fall I was walking to the University of New Mexico along Ridgecrest and was observing the cottonwoods turning a golden yellow. It must have been in late October or early November. I saw, not clearly outlined leaves, but splotches of yellow. When the wind blew slightly, they rattled dryly so that your hearing and your memory told you that they would shatter and crumble if you touched them. And I saw trunks of trees that seemed a bit rubbery, and I saw houses on which the roofs were on crookedly and the walls were not exactly plumb, and everything was conjectural, rather than firm and conclusive.
I realized that day that the world I see is that of the French impressionists. I am in an art gallery. That day I thought: Now I can respond to the questioners about what I see. Go look at some of the French impressionists.
It is not exactly fun, but it is not something one cannot learn to live with and somewhat handily. And sometimes life has its little pleasures, as always.
Richard Santos of UNM, seeing me cautiously crossing a busy street near the university, suggested I might want to get a white cane, like his father, suffering a similar affliction, had used in south Texas. They come in collapsible or telescopic form so that they can be carried without being awkward when not in use.
I mentioned this to Dr. Johnson and to my case worker, and both indicated it might be a good idea. As one said, “It lets them know you might not see them.”
I got one at the Commission for the Blind, and while walking home with it, at the corner of Girard and Gibson I thought it was time to give this sucker a try. One car was slightly over the walk line on Girard as I started across. The driver, upon seeing me, backed up about six feet, although the car was no obstruction. I of course could not indicate that I had seen the courtesy. The jig would be up. But I did have a new sense of power mixed with amusement and a new sense of security.
And the day on Central when I backed up an eighteen-wheeler at least two feet made me unbearable. After macular degeneration life is not unbearable at all; it’s just different.