Bethesda's Carole Metzger has known for more than 40 years that one day she'll go blind
Carole Metzger at home in Bethesda
I shuffle into the bathroom, barely awake. At my first look into the large mirror over the sink, I am not there. I am invisible. The mirror reflects the white wall opposite, but no human image appears. Overnight I must have become a vampire, the only creature that casts no reflection in a mirror. That’s just what I need—another mysterious problem to add to those I already list on every medical form. Will the box for vampire be right next to arthritis the next time I see a new doctor?
I stop my mind from its vague wanderings and try to better focus my eyes. I sweep them across the whole mirror again. Aha. There I am, my white nightshirt and pale hair blending in with the wall behind me. Perhaps if I had a dark suntan or bright red lipstick I would be easier to distinguish from the plaster. With my narrow field of vision now focused in the right place, I can see myself again. Puffy eyes, pale skin, hair fading from gray to white. That is me all right.
This invisibility is not new for me. For a while now, I have had trouble finding my finger when I point to a spot on a map. This was a problem while I was serving as navigator for my husband, Dave, on a recent road trip from our home in Bethesda to Alberta, Canada. It was particularly bad when the bright sun glared through the window. I think of myself as the opposite of Harry Potter when he wears his invisibility cloak—I can’t see myself, but others can see me.
What will it be like when I can no longer see myself at all? One blind writer speaks of his world ending at the edges of his body; nothing exists outside himself until he physically touches it. He has forgotten his wife’s face and his children’s appearance.
Other blind people, like my older brother, Morry, carry incredible visual maps in their memory. He can tell you to turn at the next corner to reach a hidden garden in Prague he has lovingly described down to the blossoming trees and screeching peacocks. Familiar sounds, wafting smells, the movement of air, sudden small changes in temperature, or the texture underfoot all fit in with his memory, and the world around him is clear, if not seen.
At 70, I see only a sliver of reality, and that can be a blessing. When I am staring at a pure white lily, I see just that blossom, not the brownish fading flower next to it or the dusty tabletop upon which it stands. When I am kneading bread dough in my kitchen, I am blissfully unaware of the dirty dishes in the sink and the forgotten ingredients that need to be put away.
I consider this a gift given in recompense for my fading vision. I have known for more than 40 years that this time would come, but it is still frightening and difficult to accept. The dark is closing in.
* * *
I was 26 when I found out that I had retinitis pigmentosa (RP), an inherited condition that would slowly—ever so slowly, almost imperceptibly slowly—rob me of my eyesight. This progressive disease, affecting about 100,000 people in the United States, causes a degeneration of the cells in the retina at the back of the eye. I was shocked by the diagnosis. I was finishing my master’s degree in computer science at Oklahoma State University at the time. I’d gone to get my glasses checked, like I did every year, and left with a referral to the National Institutes of Health (NIH), where researchers were conducting a clinical study on RP.
After a day of testing at the NIH National Eye Institute in Bethesda, my diagnosis was confirmed by retinal specialists. Although I was deemed unsuitable for their study, I did learn a great deal from them. Symptoms of RP include loss of peripheral vision, difficulty seeing at night, and clumps of discolored cells in the retina; I was diagnosed based on the doctors’ observation of the discolored cells. These photoreceptor cells—called rods and cones, based on their shape—play key roles in vision, transforming the light that strikes the eye into electrical impulses that are understood by the brain. When the retina fails, so does sight. In people like me, the rods usually begin to die off first, limiting one’s field of vision. If you live long enough, the cones eventually wear out, too, and all vision can be lost.
Metzger and her husband, Dave, enjoy taking walks in downtown Bethesda. He moves at a slower pace for her and signals her when they approach a curb or staircase.
Because there are so many genetic variations of RP—the disorder results from mutations in any one of more than 50 genes—the doctors at NIH could not tell me how quickly or completely my vision would deteriorate. Over the years, I’ve asked many physicians, “How long do I have?” But the answer is always the same: “No one can say.” There is still no prevention, treatment or cure for the disease, though I am optimistic that the many research paths being followed will eventually yield success. A Food and Drug Administration-approved retinal implant provides limited vision for those who are completely blind; stem cells, proteins to change eye function, and dietary supplements are all being investigated.
After my diagnosis, it took me a few months to calm my fears and get back to living my life—settling into a new job and a new neighborhood. Within a couple of years, I started to have difficulty seeing in dim light, but decades passed before I really started to notice the narrowing of my field of vision. It was small things at first, bumping into furniture or tripping over wrinkles in the rug. But over time, my sight continued to deteriorate. Like many RP sufferers, I am very sensitive to bright light, and usually have to wear sunglasses while outdoors. I have trouble seeing the color yellow—I’m blue-yellow color blind—so if someone hands me a form with yellow highlighting on it, I have no idea which items to fill out. Lately I’ve had to rely on family and friends to help me get somewhere I’ve never been, like a new shop or restaurant, though once I know the right streets to walk and the correct turns to make I can usually do it alone.
While I am by nature an optimistic person—I always assume the rain will hold off until after my walk, and that a new recipe will be better than anything I’ve made before—I do have my occasional frustrations. I knock over one more glass of water, invisible against the white table cloth. I bruise my hip yet again on the edge of my bedroom dresser. I have to walk slowly, allowing my brain time to absorb what my cane is telling me about the pitfalls ahead. But now, after so many years, I have learned patience. I have learned to cherish what I can do, not obsess about what I cannot.
* * *
As a child growing up in Detroit, the only blind person I knew was my grandfather, who lost his sight to cataracts. I knew him as not only blind, but senile, and in my mind I could not separate the two. This irrational fear was one reason my diagnosis had hit me so hard. I knew that blindness did not cause dementia, but I feared the lack of visual stimulus would cause my mind to slow down and finally decay away. I was actually in the grip of twin fears, and the second was more rational. I knew that an untreatable form of nerve deafness ran in my mother’s family, showing itself around the age of 70. What if I became both blind and deaf in my later years? Then surely my mind would slip away in tandem with my ability to communicate.
I was able to calm myself with the knowledge that my vision would be good for many years, and that it would be a long time before I even knew if my hearing would be impaired. Surely treatments would be available by the time I needed them—I knew of two clinical studies already underway, and a new organization had been founded to raise funds for RP research. Dave assured me that he was there to stand by me and help in every way, which gave me peace and allowed me to put aside my worries. We’d been married for five years when I was diagnosed in 1972, and moved to Maryland that year to pursue our careers—his in architecture and mine in information technology. I enjoyed my work as I found it to be akin to solving puzzles: juggling requirements, efficiency, ease of use and security. And, of course, the puzzle of finding those pesky software bugs.
Soon after my diagnosis, Morry learned that he also had retinitis pigmentosa. (We both have the autosomal recessive form, which means each of our parents carried a genetic mutation associated with RP, but neither has the disorder.) While I have always grieved the fact that he, too, suffers from this disease, it has been helpful for me to compare what we are going through. We talk about the nuts and bolts: white cane techniques, the recent changes in the Braille system, the latest handheld GPS devices. While he is only a year older than I am, his vision has declined more rapidly than mine. This means that I have counted on him to lead the way in my journey to blindness, to tell me what is coming and how he has coped with it.
By the time I was 30, I could no longer see well enough in the dark to drive at night and relied more on public transportation. By my 40th birthday, my field of vision had contracted to the point where my driver’s license required the use of a right-hand side view mirror, which was not standard for cars at that time. In my 50s, I began to drive less and less, only going on routes I was familiar with and avoiding highways. As my field of vision contracted to less than 20 degrees, making me legally blind, I became less confident in my ability to find curbs and dips, and to avoid walking into lampposts. I then began to use a white cane outside my home turf. Finally, in 1999, I gave up my driver’s license. I was comfortable using the Metro and buses, and it was a relief to no longer worry about my barely competent driving. I still have nightmares about driving—I’m either rushing to get home before dark or lost and unable to read the road signs.
* * *
Ten years ago, the puzzles no longer held my interest and I decided to retire. My central vision remained good, and I could easily read a book or see a computer screen. I had time to do the things I had delayed for years. I wrote and published a family memoir, Strong As Iron, to preserve the stories of my parents and grandparents for my brother’s three daughters, as Dave and I had no children of our own. I started doing volunteer work. At Learning Ally in Friendship Heights, I made audio recordings of computer science textbooks for use by blind or dyslexic students. I was delighted to help others who share my disability, but I had to give this up as my reading accuracy declined. I still spend a day a week at Bethesda Cares, where I collect information about the services rendered to homeless clients and enter it into a database.
Within the past year, my central vision has begun to lose its sharpness. Newspaper print is harder to see—I have to sit in bright light to read The Washington Post or Washington Jewish Week—and photographs are impossible to decipher. To rest my eyes, I have switched from paper to audio books downloaded from the National Library Service for the Blind and Physically Handicapped. I have listened to everything from classic mysteries like The Maltese Falcon to biographies such as Blind but Now I See about Doc Watson, even challenging books of modern thought like Christ Actually by James Carroll.
Married for 49 years, Metzger and her husband share the household chores. Dave usually does the dishes (she'll help with the drying), and she cooks.
While I can still do my share of the household chores, I need my husband’s help to determine if the chicken is sufficiently browned or where to apply the stain remover on the laundry. Dave has been my mainstay over the years, never once complaining about the responsibilities placed on him by my limited vision. He is an excellent sighted guide, walking at my slower pace as I hold his arm, always signaling me when we approach a curb or staircase, helping me avoid low-hanging branches or protruding signs. During a trip to Slovenia in May 2015, Dave guided me up and down 500 uneven steps through a forest path to reach a waterfall I wanted to visit.
When I retired in 2006, I began keeping a bucket list—challenging projects I want to accomplish before I die. This includes going back to college to study symbolic logic, which I found fascinating as an undergraduate at the University of Michigan, and getting published a compilation of my essays—some serious, some humorous—about losing my sight. But unlike most people, I also have a “dark list,” things I want to do before I lose my sight.
Whenever I read a book that describes a new place, or talk to someone from a country I know little about, I want to go there and experience it for myself. One of the first items on my dark list was the trip Dave and I made to Easter Island in 2011, a place I’d read about as a teenager in Thor Heyerdahl’s books. I wanted to see the moai, the giant statues with their empty eye sockets robbed of their power-giving vision. The next year we visited the Flaming Cliffs in the Gobi Desert, where, in the 1920s, Roy Chapman Andrews first found a wealth of ancient fossils, including nests of dinosaur eggs. I fell in love with Slovenia, the homeland of a dear friend whose memoir led us from flower-dotted Alpine meadows to the twisting streets of medieval Ljubljana to the salt pans of the Adriatic coast.
Still on my dark list is a return trip to Israel to stand again at the Western Wall and leave a note tucked between its stones, to walk the narrow, twisting streets of the old city of Jerusalem, and to swim in the Dead Sea before it disappears. This summer we will travel to Spain to explore the remnants of La Convivencia, the medieval period when Christians, Jews and Muslims lived in harmony and created the finest culture and most advanced science that Europe had ever known. I still want to take that mule-back trip down to the bottom of the Grand Canyon that I was denied as an 11-year-old child too young to meet the outfitter’s requirements. There are so many places that call to me, and I fear I cannot answer them all.
* * *
In 2013, I read a story in The New York Times about a newly-blind woman in the Bronx who refused to use her white cane. She feared it would mark her as blind and vulnerable, making her easy prey for neighborhood thieves and thugs. She was willing to risk the dangers of being hit by a car, walking into walls or tripping over curbs. She felt these were all lesser perils than her fellow human beings.
This story affected me deeply. I have long felt that having friends, neighbors and even strangers know I am blind is to my advantage. But I live in Bethesda, where the rate of violent crime is about one-tenth of that in the Bronx. I know that my white cane announces my limited vision and many people offer assistance. I am always happy to explain what is helpful, such as opening a door when I have a cane in one hand and a package in the other, and what is not—for example, telling me the traffic light has changed but not to which color. I wish to be treated as I am, a brain that works just fine connected to eyes that see only a little piece of my surroundings.
Every week I walk past a construction site near my home and a worker rushes out to ensure that I know where the barrels and debris are so I can pass safely. One day, as I was walking into the Bethesda Library, a teenager who was leaving very kindly held the outer door for me, then hurried inside to hold the inner door. I love to walk the Capital Crescent Trail, which is two blocks from where I live. A few months ago, as I reached the crosswalk at Little Falls Parkway—always a dangerous spot—a man on a bicycle said he would walk across the street with me to ensure that the cars stopped. He kept his bike between me and the traffic, shifting sides when we reached the median strip. I was touched by his sensitivity. As I kept going, the air seemed fresher and the birdsong sweeter. I felt grateful that because of the kindness of strangers, the world was still mine to walk.
Carole Metzger, who has lived in the Bethesda area since 1977, is embarking on a second career in creative nonfiction.