Glaucoma, Eyesight, Fear, Miracles, and Wonder
Although I can’t remember the exact year — 1997? 1999? — I have stark clarity about the afternoon my eyesight went all cubist on me. I was on the north side of Pennsylvania Avenue in downtown Washington DC, waiting for the first of three buses to take me home after my opthalmology appointment at George Washington University. It had been a much longer visit than usual, thanks to my eyes’ stubborn refusal to dilate as they normally do after receiving the appropriate eye drops.
We waited. The medical worker checked my eyes. No dilation. We waited. Again, no dilation. After several minutes of additional waiting, I leaned back to get another set of drops. And waited. No dilation. Memory is fuzzy, but I’m fairly certain I received eye drops at least three times before my eyes finally dilated and we were able to proceed with the examination. My eyes sometimes have been a bit slow to dilate, but never anything like that afternoon’s freak incident. Thankfully, as usual, my doctor found that my glaucoma was stable and there was no cause for concern.
Tired but in good spirits, as sometimes happens after long doctor appointments, I walked to the bus stop and stood a few minutes. Then it hit. Looking closely at the intersection line where sidewalk met street, I saw it shear off, for lack of a better word, until there were three, maybe four translucent lines where just one should have been. Sheet-like layers partially overlapped, each maybe an inch or two off from the next one. For lack of clearer words, it was as if the world went fluid. I was watching sheets of translucent reality that didn’t quite line up.
I couldn’t help almost thinking of cubism, maybe Braque more than Picasso. It was beautiful, but very disorienting. It also was strikingly reminiscent of several experiences with mescaline and LSD, the once solid visual world gone meltingly alive, in the curiosity-driven adventures of my teens. I just admired the scene a while until an immediate concern demanded attention. Try as I might, I had no idea which vision of the ground was real. Could I trust decades of motor skills to board a bus if I didn’t know which steps to trust?
Spoiler alert: I managed to get on the bus and apparently didn’t attract any attention for being severely disoriented. The bizarre altered vision also dissipated after several minutes. (I may well have dozed off on the long bus ride, willing my eyes to rest and settle down.) Also, for the record, I thoroughly liked all of the department’s doctors and staff. The department chair, Mansour Armaly, was a legendary Palestinian-American doctor who made enormous contributions to our understanding of glaucoma.
Reflecting on that afternoon when eyesight went haywire, I began to think about vision, extreme nearsightedness, glaucoma, and some of the many wondrously strange moments along the way.
Childhood: Finding a Fuzzy New World
I’ll never forget the night long ago in the family car when I decided to take off my glasses in city traffic. The sudden shock of it: I couldn’t even see cars, just beautifully strange glowing pairs of fuzzy globed lights moving in the darkness. It was years before we all heard the word “psychedelic,” but what I saw would have been right at home in the light shows that would one day screen at the Fillmore’s “acid rock” concerts in San Francisco. I was eight or nine years old.
Around that time my sisters and I had an early bed time. Lying in bed, some nights I wore my glasses to better hear what my parents were watching on TV. That sensory crossover was intriguing. Glasses meant focus in more ways than one; the alternative was dreamier, offering a looser grip on the outer world.
I frequently got stronger lenses as my nearsightedness increased. I grew used to the brief period of sharp vision that came with each new pair of glasses, and the softening, the blurring that always followed. The clarity inevitably faded as nearsightedness progressed. Recognizing that I didn’t see distant objects as well as most people, my relationship with eyesight subtly changed.
Sight was clearly a sensory experience, but it also was internalized. It was a feeling. I had tremendous admiration for my long-time opthalmologist. He was a good doctor, had a private practice, and spent a lot of time with patients. He also would grow frustrated with me when I tried to select which image was sharper than the other. I’d look and look at two images that looked practically identical, then say that one “felt” sharper than the other.
OMG! Ben & Jerry’s in Quart Sizes!
I started wearing contact lenses in my teens, but sometimes would switch back to glasses for an extended period if the hard lenses became too irritating. (This was many years before development of much gentler soft contact lenses.) In cases of extreme nearsightedness, glasses improve vision but also make everything appear much smaller. This apparently is caused by the distance between the lens and the eyeball. In sharp contrast, contact lenses reveal the world in its “true” size.
This enormous difference could be extremely disorienting whenever I returned to contact lenses after having worn glasses for a long time. I was astonished more than once to discover that Ben & Jerry’s had started selling ice cream in quart sizes. Then I realized — an enormous OMG! moment! — pints are actually that big. Wow! Being surprised once by the sight of Ben & Jerry’s quart sizes was a huge shock. Being just as surprised the exact same way years later suggests just how enormously the whole world expanded when I returned to contact lenses. Or perhaps it just indicates I’m a slow learner!
(I once heard or read that Leonardo Da Vinci understood why eye glasses shrink our visual world. He then theorized that if lenses were placed directly on the eye — our contemporary contact lenses — this could correct that size differential. Centuries would pass before the necessary technology existed.)
Age 39: Glaucoma
My glaucoma was discovered about 31 years ago, roughly two months before my 40th birthday. It seemed a rather inauspicious way to enter a new decade. I’d been fascinated by medicine and diseases as a child, and almost always first read the medicine section of Newsweek magazine when it came in the mail. Two diseases were particularly frightening: leukemia and glaucoma.
I was wearing contact lenses at the time of my diagnosis, and my two new medications complicated my life. This quickly became extremely annoying. Going out with friends after work meant that I’d have to go home, take out my lenses, put one eye drop in each eye, wait several minutes, put in the second eye drops, and then wait several more minutes before putting my contact lenses back in. As a bonus insult, one of the medicines also made my eyes very bloodshot. (Thankfully, I have forgotten the names of those first prescription medicines.)
It was fascinating to observe how rapidly the sheer terror that immediately followed my diagnosis gave way to vanity and annoyance. I guess that’s a quirkily positive human trait. Most of us understand that we will almost certainly experience intense pain at some point in the unpredictable future. Spending too much time contemplating this terrifying almost inevitable future pain could leave us paralyzed. Instead, we just forge ahead blindly — (pardon the pun) — doing the best we can, finding little things to complain about as we go about living our lives. The good news is that my glaucoma has been under control over all these years.
Mind Blown: Seeing My Eye
Years ago I told a retinologist about the mind-blowing time I saw my eye. It was in one of my regular opthalmology checkups. An incredibly bright light was shining in my eye. Tears were streaming down my face. The sensation was very intense, but not exactly painful. Suddenly, as if watching from a satellite in outer space, I saw a bizarre landscape with an incredibly intricate river system, hundreds of rivers running together, like on a vast globe. Most were just very narrow, tiny, meandering lines.
Looking back on the experience, those squiggly lines remind me of the small “blue highways,” remote rural two-lane roads on old travel maps. The difference is that there were so many, seemingly hundreds or thousands, all together, filling my visual frame. It was strange but very real, not my imagination, and staggeringly beautiful. The sight of it left me completely shaken. When the medical worker finished shining the light I told her I’d just saw the most amazing thing. She listened, and then explained that this sometimes happens. I had seen my eye.
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I wouldn’t wish glaucoma on anyone, but I have to say, that experience was incredibly beautiful.
Profit-Driven “Health Care”
I’ve had some horrendous profit-driven medical experiences over the years. Fortunately, none have been related to my eyes. I’m grateful to have had very good opthalmologists, retinologists, optometrists, and all the other vision-related health care workers over the years.
That said, years ago I couldn’t help overhearing workers talking among themselves, complaining about the business side of their practice. Specifically, how they were strongly encouraged to promote use of the new Lasik surgery.
I also can’t help thinking of the time in my early 30s when I didn’t have health insurance. I had left a job, and lost my insurance coverage somewhere along the way. One after another, companies rejected my application to buy insurance. I finally emailed one to ask for an explanation. The answer came back in one stark sentence: “We do not offer health insurance to people with ankylosing spondylitis.”
I came to think of it as their “go away and die” message.
I had the first of what became many tornado dreams very shortly after receiving that email. In the dream, I was walking south on a sidewalk along Rockville Pike. This was part of a three mile or so loop I did fairly often at that time. The National Institutes of Health campus was on my right, the Navy Medical Hospital — which would become Walter Reed — my left. Suddenly, miles off toward the southeast, I saw a very stylized almost cartoonish tornado. The center was a straight line. A curving line spiraled around both sides of it. The tornado was frightening, and at the same time almost looked ridiculous.
A day later I suddenly realized what I’d seen. It was the iconic medical symbol. My lack of insurance had been a concern, but honestly hadn’t worried much about it. Recognizing the stylized “tornado,” I suddenly realized how frightened I was. Months later I was able get insurance in a group plan.
I avoided doctor visits in those months without insurance. My glaucoma was diagnosed several years later, but I can’t help wondering what would have happened if I didn’t have health insurance when I most needed it.
A Big Scare
My first macular degeneration scare was probably more than 15 years ago. An eye exam had raised concerns, so I saw a retinologist to get a closer look. He was completely professional, but showed no personal warmth at all. He didn’t do anything wrong or cruel in any way. He was just quite rigid in demeanor and very guarded in our interaction.
I was pleasantly surprised when he opened up completely after the eye exam reassured us that the potentially serious problem did not exist. What followed was a warm, friendly, expansive conversation that recalled other enjoyable moments with doctors I’ve admired over the years. He was clearly a very likeable and compassionate doctor.
I started to think of how hard it would be to have to give people life-changing bad news as a regular, frequent part of your job. I guess in that first part of our meeting he was just steeling himself in anticipation of a very difficult conversation. I’ve heard that doctors have high rates of suicide. It’s not hard to imagine the stresses compassionate doctors must feel as bearers of shatteringly bad news.
Still Capable of Surprise
I’ve been blessed with a life rich in OMG moments. One of the biggest was an astonishment that actually lasted several days, becoming a part of everyday life when I was well into my sixties, a time I’m no longer easily surprised. I’m thinking about my cataract surgeries.
The clinic in downtown Silver Spring brought back memory from years before when my older sister and I accompanied our mother to the same place. We drove through a blizzard that day, just glad to make it through the snow. Thankfully, weather conditions hadn’t forced us to reschedule. Better yet, my mother’s cataract surgery was a big success.
I had been instructed to get a new pair of glasses with a much weaker prescription prior to my cataract operations. The old one, expressed in language of diopters for prescriptions far beyond the usual 20/# notation, was — 13.0 for my right eye, and -14.0 for the left. When the Costco optician saw my new, much lower prescription request, he double checked with me to make sure there hadn’t been a mistake.
Wow!
It was probably at least 20 or so years ago that I finally gave up on contact lenses. They had once again started irritating my eyes, and I just had too many other annoying issues that needed attention. My eyes stopped hurting and my whole visual world once again shrank to glasses sized. It was worth it.
Calling my post-surgery eyesight “New and Improved” would be an understatement. I suddenly had a whole new relationship with seeing. My eyes were completely different. I did an errand one morning, riding a bus and not even taking my glasses. (Attempting a feat like this would have been almost suicide-level stupidity for most of my life.)
Perhaps most strikingly, I carefully gripped handrails when slowly descending stairs. It was a bit daunting — even dizzying — to suddenly have stairs appear to be about a foot lower than they had been in my comfortable old glasses-world. This is intriguing — at least it is to me. My corrected vision had not only enlarged individual objects. It also increased the space between objects. (i.e., my feet and the stairs.) You might say my whole universe expanded.
Years after my cataract surgeries, I still grip the handrail and walk more cautiously on stairs. As a side note, I’ve had to re-learn how to climb stairs five times as an adult: recuperation after each of my four hip replacements and my (thankfully) only one cardiac triple bypass. It’s a humbling that feels good to me. (Although not necessarily at the time, LOL!)
At first, those five or so stairs in the rehab center might as well be Mount Everest. Eventually you succeed. It’s like a reboot over and over again through the years. Life simplifies. One step at a time. If there has to be a lesson, I suppose it’s to enjoy your steps while you still can take them, and take the time to appreciate your eyes while you still can still see. Oh, and be open to surprises and savor the occasional OMG!
