Learning to ride, falling down, getting back on
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I wait uncomfortably in an inclined chair in my eye surgeon’s office, wearing a bib as if I were about to get my teeth cleaned. I wish. A few inches from my elbow are several sterilized instruments, including a speculum and a hypodermic needle. My left eye is numb from a gel and an injection of lidocaine just under the lower lid. That was the easy part. Another shot is yet to come — to be administered directly into the jelly-like mass that is my eyeball.
What brings me here is a condition called ocular histoplasmosis syndrome, a leading cause of vision loss in Americans between twenty and forty. (At the age of fifty-seven I am a late bloomer.) Histoplasma capsulatum is a microscopic fungus common to river valleys and places with heavy accumulations of bird or bat droppings. Its spores, which get thrown into the air when soil is disturbed and then breathed in by humans, are relatively harmless unless they spread from the lungs to the eyes, where they affect the flow of blood and nutrients to the retina. Even then the effects go unnoticed unless, as in my case, the fungus damages the macula, the part of the retina responsible for central vision. The macula is what allows me to see my wife’s smile when I bring her a cup of coffee in the morning, or to spot a cerulean warbler in the upper branches of a hickory tree, or to admire the countless reds and purples in a desert sunset, or to observe the changes in my grandchildren’s faces as they mature. All things I can no longer take for granted.
If I close my right eye and rely solely on my left, straight lines bend and contort, and faces appear as they would in a fun-house mirror. Light also diminishes, and color washes out so that the yellow digital clock on my stove turns white. If I had to get through life with only my left eye, I would have to give up driving and, perhaps my greatest pleasure, reading.
When I was first diagnosed, I thought that one day I would wake up and find my vision normal again. I know now that this will never happen. In my research I have discovered that there’s a chance I will lose vision in both eyes and become blind.
Not unexpectedly, I have begun to notice people in public who have impaired vision. In the coffee shop I study a man who holds his newspaper an inch from his face. On the city bus I watch a woman with her guide dog deftly board and disembark, exhibiting almost telepathic communication between human and canine. At a busy intersection I hold my breath as a man waving a white cane in front of him like an antenna crosses in front of an impatient line of vehicles. I wonder if I will display the same courage should I lose my eyesight. I am a private person who does not like to draw attention to himself. I don’t even like to eat an apple in public because of the loud crunch. Yet, if I become blind, I will be unable to hide my disability.
When and where did I first inhale the spores? I think back to my scrappy migrant-laborer days: stooping over the wet daffodil fields of Northern California; climbing the rain-slick, vertiginous hills of Washington State; driving a tractor in Michigan’s Upper Peninsula; shoveling sharp-smelling silage to sixty voracious cows twice a day, seven days a week. I could also have encountered the spores last spring while driving through the “histo belt” of the Ohio River valley with the windows down to smell the freshly turned soil. How could such a simple pleasure lead to such heartache?
Inside the examination room I am surrounded by posters featuring instructive yet fearsome diagrams of all the horrible things that can go wrong with one’s eyes. I cannot read the writing on the posters unless I stand a few inches away. In the hallway the nurses and techs chatter about weekend trips and lunch plans. Through the thin wall I hear my surgeon, Dr. P., explain an upcoming procedure to another patient. I catch the word blindness. My eyes return to the tray with the instruments. I am entering new territory unprepared.
In an attempt to calm myself I visualize a trail in the Marble Mountains of Northern California. It is 1981, and I have slipped into the wilderness for a week with a backpack, a bedroll, a journal, and my canine companion, Emmie Lou. Like all twenty-somethings I feel immortal. My heartbeat is strong and steady, and I can ascend steep slopes like a Sherpa. My senses are heightened, my vision never more acute. I see everything: the crimsons of Indian paintbrush, the indigos of lupine and larkspur. Everything except the future, which is as much a mystery as each switchback on the mountain trail. I can’t imagine the concerns that will come with age: the worrisome lumps and lingering coughs, a misdiagnosis of Hodgkin’s lymphoma, a swelling prostate, three hernia repairs, two heart ablations to control atrial fibrillation. Back then, in the California mountains, I could never have pictured myself anxiously awaiting a phone call from some distant lab, informing me whether a test is positive or negative.
Like most life-changing events, my passage from healthy to unhealthy began with denial. I was staring at my laptop in a hotel room on the banks of the Mississippi River in La Crosse, Wisconsin, at the end of a long, satisfying day of reporting for a magazine. I was looking forward to a celebratory dinner of grass-fed beef and locally grown salad greens, followed by a decadent dessert. Suddenly a wave began to move across the top of the computer screen. I scrambled for an easy explanation: an ocular migraine or eyestrain from excessive web surfing. I even blamed the heart meds I was taking, because it seems every prescription lists distorted vision as a possible side effect. But I eventually ran out of rationalizations.
The morning I was diagnosed, Dr. P. pointed to a monitor on which my eyes were digitally represented by two pale-green circles floating against a white background. The cross sections of my retinas resembled the geological maps I’d used when negotiating those California landscapes.
“See the lesion?” Dr. P. asked, as if delighted with his discovery. “It is directly above your field of vision. I think we can do something about this.”
The “something” would be regular injections of a drug called Avastin to shrink the lesion and lessen the distortion. But my vision would never be great, and I would receive these injections periodically for the rest of my life.
You’d think at my age I might realize that the spinning bottle of medical fate would eventually stop and point to me. I have known too many people who have passed away: diseased hearts, prostates, and colons; the effects of Agent Orange; or just plain bad luck. As I approach sixty, Why me? is evolving into Why not me?
I think back to an overcast November afternoon when I visited a friend for the last time. She was in an upstairs bedroom. (The following week her bed would be moved into a glassed-in porch, so that in her final days she could watch the birds at the feeders.) Her doctors had told her there were no more chemotherapy options. What had begun as fuzzy vision in one eye had turned out to be ocular melanoma. The cancerous eye had been removed and replaced with an artificial one. She’d made the decision with no hesitation, no outward appearance of self-pity.
On the day I saw my friend, she was curled up in bed surrounded by pill bottles and skin creams. Classical music played softly on the radio. The window shades were drawn. She was alone except for her cat and had left the front door unlocked for me. Her stomach was distended — her husband had to drain the fluid several times a day — and she lifted her pajama top to show me, saying with a laugh, “I look pregnant!”
So this is what dying looks like, I thought.
Today I would replace the word dying with living.
In the last year, between grueling weekly trips to St. Louis for treatment, my friend had traveled to Norway, where her daughter was working at the time; to Boston, where her son lived; and also to Alaska. Even with one eye, she continued to experience the world with all five senses. She expected the rest of us not to treat her as if there was an end date hanging over her. Of course, there is an end date hanging over all of us.
In her bedroom I handed her Happy Life, a book of verse by David Budbill. I shared with her several poems about the elemental things we often miss in our busy, modern lives: wind, light, wood smoke, falling water, an owl’s call. Her expression seemed to brighten when I read:
At my desk all morning.
In the woods all afternoon.
Headed home now through the yellow light.
At my desk all morning.
In the woods all afternoon.
Headed home now through the yellow light.
After a half-hour I prepared to leave, thinking I was tiring my friend out. She reached for my hand and pleaded, “Don’t leave yet. This is wonderful.”
I hear footsteps outside the room where I sit, and Dr. P. enters. He sterilizes the outside of my eye with iodine. When I complain that it burns, he says, “That’s normal.” Then, with the lightest touch, he brushes my hair away from my face. I was not expecting such a tender gesture in this cold, sterile environment, with its colored posters showing all the ways our eyes can fail us. For the rest of the day I will remember his hand — the steady hand of a surgeon — moving those strands of hair. I love his hands. I love his knowledge. I love his confidence. I love that he is trying to save my eyesight.
He pins my left eyelid open with a speculum. Blinking is no longer an option.
“Look down and to the right,” he says. “You will feel a little pressure.”
Define “a little pressure.”
A nurse slips into the room without a word, sits down, and takes my hand. Hers is warm and soft. Mine is cold and sweaty. She squeezes. I squeeze back.
Dr. P. administers the injection with the nonchalance of someone buttoning a shirt. He might as well be whistling while he works. He is, after all, a trained technician, and this is not his first time sticking a needle into someone’s eyeball. Thankfully I feel nothing, but I see the swirl of Avastin entering my eye like a great gathering of amoebas.
When Dr. P. has finished, he pats my shoulder affectionately. “I hope you weren’t planning to go back to work today,” he says. “I want you to keep your left eye closed for twenty-four hours. Don’t do anything besides take a nap or listen to music.”
Dr. P. leaves, and the nurse pries my fingers from hers and begins to rinse my eye with saline. As she works, I think back to my first job, delivering prescriptions on a one-speed bike for Rosen’s drugstore in Chicago’s West Rogers Park. I was thirteen. (Back then, kids were allowed to have jobs like that.) One of my first deliveries was to a third-floor walk-up, where a man answered the door with a blank, distant stare, and I realized he was blind. I gave him the package, and he took out a small wad of bills. The ones were folded in half lengthwise; the fives were folded into triangles. I pulled out two fives and told him he still owed forty cents. He dug into his pocket and produced a handful of change, then spread the coins in his palm and carefully felt the size of each. His dexterity was impressive. He reached for my hand and pressed a quarter, a nickel, and a dime into it. I had been studying magic at the time, and it seemed like a neat trick. Without his sight, how did he know where my hand was located? To my young mind, here was someone to be envied, not pitied: a man with a skill to celebrate, an inspiration.
Stephen J. Lyons