What I Miss Most...
PXE Vision: By and For PXEers
by Pat Manson
What I Miss Most (about not seeing)
I´ll be blunt. The purpose of this installment of PXE Vision: By and For PXEers is to [choose one: whine, complain, bitch, kvetch, gripe, rant or vent] about how PXE has ruined my eyesight and about how that loss has screwed up my life. Yes, I know: I´ve counseled in previous columns against feeling this way about PXE and most certainly against acting upon those feelings. No, I haven´t changed my tune. I still sincerely believe that PXEers are fortunate to have only PXE, to have PXE International in our corner, and given recent medical developments, to have been born when we were. And I remain convinced that succeeding with PXE, as with other life challenges, is almost solely within the control of the individual PXEer. Finally, PXEers, even those with serious vision loss, need to be thankful they don´t have diabetic retinopathy, retinitis pigmentosa or numerous other disorders that can leave those affected truly blind. All that said, however, make no mistake: any vision loss makes your life more difficult. But losing your vision to the point of being legally blind is simply awful, even devastating at times.
I am one of the unlucky third or so of PXEers over 40 who are “legally blind,” i.e., visual acuity of 20/200 or worse. In this entry, I´m going to allow myself to [again, see options above] on my lot in life. I´m doing this for 2 reasons. First, I expect that it´ll feel good to get some of this off my chest. Second, I hope to let the rest of you in on what it´s like for us.
So, you say, I don´t practice what I preach about maintaining a positive attitude, keeping a stiff upper lip and all that? Usually, but not always, not this time. Sue me.
A PXEer´s low vision isn´t merely a more serious degree of “normal” poor vision like acute near- or farsightedness. Our world doesn´t simply look a little blurry or out of focus as though we needed a new eyeglass prescription. Far from it. Remember we´ve only lost central vision, usually asymmetrically and often only partially. I describe my vision to those few who ask as if I were seeing through sunglasses smeared with lumpy Vaseline. Sunglasses because PXEers whose eyes have started to go downhill don´t take in light well, so we often cannot perceive color contrasts. The world we see is flatter in color, hence less contrast. Vaseline because what we can see is smeared and distorted. Lumpy because some things are blocked out altogether. And yet, all this doesn´t really do it justice.
In fact, PXEers´ low vision is often so weird it´s almost indescribable. You´ll be looking at something—your car in the driveway, the coffeemaker on the kitchen counter, your spouse´s face—and although you know it´s there, it´s missing, lost in the smudge that dominates the center of your visual field. Then you step closer, cut your eyes or tilt your head and there it is.
That´s how PXEers with serious vision loss see the world. With all these changes from my former life when I could see normally, there must be certain things I miss, right? Absolutely, more than those of you with full, or at least better, vision can imagine. Some momentous, others mundane and yet significant. Here is my personal Top Ten—in order.
1. Reading. This was an easy choice for my #1. Until 4 years ago, I was a voracious reader, often consuming 30 or more books per year as well as whatever else my eyes lit upon. I can certainly be a snob, but I was an omnivorous and often undiscriminating reader. I read everything: long, tedious, heavily foot-noted histories and biographies, spy and cop thrillers, preposterous horror novels (especially those featuring undersea creatures), gardening nonfiction, classics and classics-to-be, and design books. Then there was the stuff in addition to books—The Wall Street Journal and my local newspaper, the cereal box at breakfast, countless magazine articles, the package insert with my vitamins, whatever. I wasn´t picky. And I still haven´t even mentioned my reading at work. I was, am, a sponge, thirsting for information, retaining some, much of it useless.
I still read, but it´s not the same, not even close. The thirst is still there, but my reading speed and my ability to absorb and process what I do read are gone. I might read—via audio—3 or 4 books per year now. By using my CCTV or by enlarging documents on my computer, I can still read shorter pieces. If it´s any longer, I lose the thread. Whatever the length of the item I´m trying to read, my reading comprehension has definitely suffered. Visual memory is a critical part of overall memory, and my vision stinks. When endeavoring to read with their eyes, low vision readers are reduced to reading like they began as children, reading one word at a time in “Dick-threw-the-ball-to-Jane” fashion. It´s slow, and we often have to read it twice to get it. I have tried audiobooks as well as pressuring my family to read to me, but neither has proven satisfactory to date.
2. Working. I miss work. As I´ve noted earlier, I worked as a corporate lawyer. I don´t miss the pressure, the long hours, the travel. But there are plenty of things I do miss: the community of the workplace—the jocularity, the affection, the intellectual challenge, the teamwork, the humor with an edge, the competition—as well as applying the law to business, formulating a plan of attack to correct a problem, managing a team of professionals. I worked as a lawyer for 20-odd years during my 20´s, 30´s and 40´s . . . and then abruptly stopped. Giving it up was really the only possible decision because I could no longer perform effectively, but walking away from my career with another 10 to 15 years of peak energy and ability ahead of me was not easy. It´s also a move I revisit almost daily.
3. Driving. I´ve never been a car guy, but I did love to drive. I loved the feel of the road beneath me, its connection to the tires, the steering wheel and me—a thoroughly sensual experience. Of course, I also valued the independence, the ability to go where I wanted whenever I wished. Driving also satisfied much of my curiosity about what was going on outside of my immediate world. While running errands around town, I often wandered off to explore a new development or discover where an unfamiliar street led. I especially liked driving alone with the stereo loud, really loud.
Now—incredibly—I´m totally dependent on others, chiefly my family. I can´t cruise my hometown anymore, I can´t go work out at the YMCA when I choose, and I´m at times a burden—or, at least, a chore—for those I care about the most. For example, my parents—God bless them—have tried valiantly to prevent me from being too housebound when my wife is at work. At 80 and 78, though, they´re probably not the best candidates to serve that role. My father, who has unrelated vision problems of his own, also has sleep apnea so he can be inattentive. My mother has glaucoma and has lost some of her visual field. Both are hard of hearing and don´t know their way around town as well as they once did. Nevertheless, they´re often my drivers! Sometimes, my predicament frustrates me, but generally I find it darkly comical. What kind of cruel joke is it that they´re driving me? Just the same, I usually get there, and I usually manage to laugh about it.
Others, too, have stepped in—our sons, some friends. One friend has generously revised her workout schedule to include me, so we train at the YMCA at the same time.
4. Riding. Not far behind driving was riding with someone else behind the wheel. Riding satisfied my wanderlust but gave me more freedom to look around. Of course, at present it´s my sole means of transportation, only now I can´t see much. To add insult to injury, I often get motion sick while riding, presumably because my eyes, unable to focus on anything in particular, don´t stay focused on the horizon. Also, riding can be frightening: cars bubble up through my smeared vision and seem alarmingly close. My driver has invariably seen the other car and reacted properly, and we—and they—are fine. In the meantime, however, I´ve been startled and have gasped, scaring everyone in the car with me. I´ve taken to riding with my eyes closed.
5. Looking at Women. I´ve never been a womanizer (see above photo), but that doesn´t mean I don´t appreciate women . . . a lot. I truly enjoyed looking at them—at the mall, in airports, in my office, at the Y. They could make me feel alive at times. Sometimes they even made me think . . . well, never mind. Jimmy Carter already covered that. My wife Gerlinde assures me that I wasn´t offensive to them or to her. Now, women are practically lost to me. On a good day, they look like the hilariously distorted figures in the Fun House mirrors at the State Fair—blobby overall, headless until they get closer, then their heads blossom into large splotches of color or disappear altogether—a Rorshach test of sorts. The same happens with their other parts that men also appreciate. I take little pleasure in any of it now.
My sons have generously stepped into the breach. Observing me occasionally no-longer-subtly straining to see a (I hope) woman, they have taken to quietly volunteering things like “Yeah, she´s hot, Dad” or “Geez, she´s sixteen maybe.” My wife even does it occasionally.
As difficult and unrewarding as it is, I´ve kept looking. It´s hard to stop a lifelong practice.
6. Looking at Faces. I´ve always been a people watcher. I like to read people by their nonverbals and used to be pretty good at it. That was an important skill in my former profession. Now, because I can´t see much of them, I often feel somewhat disconnected from others as though I am unable to hear them even though I know they are talking to me.
In the business world, you´re taught to always maintain eye contact, so I still do that, sort of. However, unless I´m really close, others´ heads, much less their faces, are spectral, a blur really. So I´ve learned to keep looking intently at the blur, and most are fooled.
Back when I was still working but after my vision loss, I would notice a slouch, folded arms, a chin jerk and would ask, “Are you giving me a look?” My poor staff not only had to put up with the usual bossy demands but also had to describe their own expressions.
Far more important than my professional life, however, is my personal one. I´ve been compelled to ask my family members, my wife in particular, to identify and translate the look on their own faces. When I fight with my wife—it doesn´t happen often—I have to ask her if she´s crying because I can´t tell. How lousy is that?
Then there´s my own face. It may not be great (again, see photo above), but it´s mine. I still have to take care of it—cleaning, shaving, etc. In the 4 years I´ve been legally blind, my hair has become grayer (any connection?), but I really don´t know how much. I´ve had to rely on others to tell me (and I suspect they are often less than candid). I recently grew a beard for the first time in 25 years. I was just curious to see how it looked; I´ll likely shave it off soon. But I still can´t see it well because I can´t get close enough to the damn mirror. So I´ve had to get others to tell me about it or—get this—to ask my son to photograph my face and then send the photo to my computer. I then enlarge that image and—voila!—my face finally emerges. Think what a mere moment that takes the rest of you.
7. Being at One with the Universe. I used to consider myself pretty coordinated, graceful even at times. At 48—when my eyes went—my jock days were largely behind me, but in my everyday life, some vestiges of those skills remained. Cutting through a crowd, handling luggage, packing the car trunk, chopping wood—I took pride in how I performed these and similar physical tasks. Now at the mall or at an airport, I hug the wall to allow others to pass me. They´re walking like I used to—fast. Well, sure, they know where they´re going. I haven´t even spotted my destination yet and am flying blind. Formerly, I left everyone behind when shopping or traversing a busy street. No more.
A year or two ago at Christmas, my wife gave me a set of wonderfully delicate wine glasses I´d admired. I´ve broken all but one of them since. They´re transparent, of course, so I couldn´t see them well. When doing the dishes, I would fail to notice them in the dish rack and kept smashing plates into them. I even drove one into the kitchen countertop, not realizing how close the glass was to the surface.
8. Speed. I miss simply getting things done efficiently, checking them off the list. When I´m dependent on others, my agenda naturally is secondary, and I am now time-inefficient, a cardinal sin in my previous life. When I´m on my own, it´s almost as bad. Getting dressed or making the bed takes twice as long. Writing a check, maybe 3 or 4 times longer. Writing this column, at least 10 times as long. I have developed quite a few adaptive techniques—color coding, big-lettered labeling, always putting things in the same location, etc. These strategies are critical, but they can only recapture a fraction of the lost time.
9. Attending Events. For me, this problem started at the very beginning of my vision´s decline. My younger son had just made the JV basketball team for the first time when I began to lose my vision. I attended his first few games as I always had with all of his games during previous sports seasons. This time, however, I couldn´t figure out what was happening on the court. I know basketball, but I simply couldn´t see well enough to follow the action. I´d bought these impressive glasses/binocular combo things that allowed me to see static objects from afar. But basketball is constant motion, and no sooner had I focused on the players than they´d move and were gone. I couldn´t even tell if my son was playing, and my strange glasses/binocs things were giving those sitting around us the creeps. I stopped attending his games
That was just the beginning. I´ve been to the movie theater exactly once since my vision began to fail—it was still 20/100 then—and it was a total disaster. I couldn´t follow the plot—the actors were indistinguishable—much less comprehend what was in each scene or read the actors´ expressions. We watch movies at home now where I can move my face to within inches of the TV screen. It looks odd, I´m told, but it works.
My wife really likes plays, so I´ve always tried to go with her. Well, unless we can snag the very best seats, it´s useless. I´ll drive her crazy with questions. And obtaining those seats is often unaffordable or simply not possible.
Often at such events, in the absence of visual stimuli, I zone out, drift. Without anything to look at, listening to a long sermon at church, waiting in the doctor´s office or attending a concert can be tedious or at least not engaging. At such times, I feel isolated, like what I imagine it´s like inside a sensory deprivation tank. Often in these settings, I just fall asleep.
10. Participating in Sports. As I´ve conceded earlier, I´m a little too old to be much of an athlete any longer, but I was still dabbling in it when my eyes gave out. I jogged a little, biked some, did cardio and weight machines at the YMCA and shot baskets in our driveway. That seems a very long time ago now. While I still try to do some of these, it´s tough. Biking and jogging now require a chaperone. At the Y, I can´t read the weights or the readouts on the equipment. I can´t even tell the time on the clock on the wall. But I do ask for help from passers-by, and they are usually courteous and helpful. Some of them might even be women I´d want to check out, but I can´t tell.
My Top Ten is just that: the worst of a bad lot. There are plenty more. There´s eating, for example, which now requires help in identifying what´s on my plate and in cutting up my meat. To prevent mishaps, I often lift my plate up to my mouth, as many do in Asia. There´s also exiting a car, another surprising challenge. Locating the handle to open the door is all but impossible. Trying to insert an electrical plug into a wall outlet is very hard—and embarrassing. Then there´s counting out my pills or money. Tying my shoelaces. Using a credit card. You get the idea.
I use lots of the tactics known to those with low vision. I look past a person´s head, for example, thus giving my peripheral vision the chance to actually see his face. I take a hand-held magnifier with me everywhere. I use big Post-It notes to label other, bigger pieces of paper. These tricks truly help, but they can only go so far.
So why haven´t I killed someone (assuming I could get him to stand still, wave both arms, identify himself, etc.)? Or at least beaten my own head against the wall? Because anger would be pointless, counterproductive even. Try finding that elusive document on your desk or plugging in that lamp if you´re mad about the difficulty you´re experiencing. You won´t.
With all of these obstacles, how have you coped, I´m occasionally asked. The solution was simple to identify but not nearly as simple to do. You must lower your expectations. If I were to get angry at every snafu or stumble, I´d be angry all the time. But where would that get me?
The key is to ratchet down what you expect you can do every moment of every day. If you´d lost a limb or gone deaf, you´d certainly give yourself a break, not hold yourself to your previous standard. Same thing here. Just because you look and sound the same doesn´t mean you are the same. Trust me: you´re not. We´re not. Nevertheless, I´ve found that I can do almost anything I could do before if I calm down and allow myself enough additional time to do it. That takes patience, a virtue few would have attributed to me formerly. But I´m certainly more patient now. And it gets easier all the time.
That´s it. It´s hard, sure, but so what? You´ve got to keep going.