Lost and Found
Finding positivity in vision loss
I associate lost and found departments with many places and many spaces, including restaurants, subway stations, and school offices. When I recall the loss of specific items, such as my foldaway blue umbrella, my Sunshield sunglasses, or my blue swim goggles and neon blue swim cap, I recognize parallels between finding easily recovered items and those things that may be lost forever.
I face a personal, painful, and progressive process of reinventing myself with profound vision loss. I ache for a magical wand that would clarify my world and create an instantaneous cure, but have not encountered this swift fix yet.
As a visually impaired person, my progressive loss of vision over the last ten years of my life presents new obstacles and opportunities each and every day. My challenges involve loss of visual and sensory detail, generalized blurring, and an inability to recognize faces and familiar objects. At times I also experience disorientation even within the familiarity of my own home. Whether I encounter these changes individually or as a conglomerate, they present me with obstacles where I need to sink or swim.
I have been known to continue conversing once a person has left the area, but I am fortunate that others don’t dub me as someone who is strange. When I swim in the pool with my husband, I am sure that more than once I have called a stranger that I think is my husband “honey” as they approach the end of the pool where I want to make a comment or begin a conversation.
To my relief, no complaints have been filed about my behavior. In fact, this club in the Oakland Hills has kindly installed a coil lane divider at the far-right lane of the lap pool, designated for my use so that I don’t jet off diagonally into other people’s lanes. With that accommodation, many others enjoy the divided lane when I am not there, as it helps guide them on all their strokes.
At home in my bedroom, obstacles, stray items, or junk cannot litter the floor as they are trip hazards to me. With my progressive loss of color identification, I adapt new ways of organizing my clothes — types of clothing are sorted according to length and function, and by color. It’s easier for me to find one blouse in blue when it is nestled amongst others of the same hue. My drawers hold their own kind of compartments, so for example, my first drawer holds from the left to right — underwear, bras, socks — which I can readily locate. The remaining four drawers are organized in this fashion, but I will spare the reader of an exhaustive inventory.
Another challenge for me is matching pairs of shoes with their mate, so I always store them together. In contrast, earrings pose a greater difficulty for me. Although they hang on narrow dowels on my earring rack, I cannot always recall in my visual memory what colors or shapes the earrings possess. So, to be certain that I have a match, I summon my husband to the rescue.
In my bathroom, I am grateful for having my own vanity and sink. I identify items based on the shape of the container and its position in my medicine cabinet or drawers. I am grateful to note that I have not mistaken a household cleaner for mouthwash, or sunscreen for a steroid cream. One task that I needed to change was how I prepped myself to brush my teeth. For the past five years, I could not reliably place toothpaste on the narrow, bristled area of my toothbrush.
So, at the suggestion from another vision friend, I placed my toothpaste upright in my stainless-steel cup. When brushing my teeth, I remove the cap from the tube and squeeze an ample amount directly into my mouth, which has worked like a charm. I merely warn others, whether guests or my daughters, to not use my Kathy tainted toothpaste, which they readily adhere to.
When I look into the mirror, morning and evening, I recall the evil stepmother’s refrain, mirror, mirror on the wall, who’s the fairest of them all. I do not expect the mirror to respond, but I look for something visual as a reply. The messages that return to me are blurred, foggy, and amorphous in contrast to the clear definition that I once received. Today I am wearing my favorite light blue fleecy robe whose outlines I can barely see, and I must finger my light brown hair to ensure that it is still there.
For most of us, the mirror shows us the appearance of our outside selves, but I must look further inside to reinforce that I still exist, and I am a valuable human being. I feel the need to have moments of introspection and reassurance that I am a solid person. I must not allow myself to evaporate or disappear into the abyss of vision loss. I feel that my blindness fuels my internal introspection more so than when I was sighted. I am still discovering ways each day to validate and reassure myself that I am a vital being.
My most significant loss is the inability to recognize faces or persons in my surroundings. How do you compensate for not being able to see the people you are talking to? I intuit based on their words, tone, and interactions. Once they speak, I am confident about who they are. If we are in a social setting, I alert people to “tell me your name” or “identify yourself” so I can begin interacting with them.
Without being able to identify people, if I want to know what someone is wearing, I ask them. For example, I asked my niece, Ali, at her 2020 backyard wedding, if I could touch her wedding gown. When she replied, yes of course, my fingers scanned the upper part of the dress to determine the bead designs on the bodice, and that felt gratifying.
What others in my life have gained, is the fact that they have become ageless, without a gray hair count and with smooth, flawless skin. For the males in my life, unless I feel their face, I cannot detect razor burn, stubble, or beards. If there have been foibles in people’s attire, whether mismatched clothes or recent stains or bad hair days, they are off the hook. So, in many ways, I have far fewer attributes to judge people by and my acceptance is based on what people say and the earnestness and spirit with which they say it.
In some ways this becomes a win-win situation for us all. It wouldn’t matter if someone were to wear a burlap sack or a Versace dress in my presence, they would be regarded as the same to me. For those friends and family who expect me to offer compliments for how they look, I am sorry, but they will not find it from my mouth.
With steady vision loss, my nursing career of 40 years ended in 2015. I struggled to find a sense of purpose, meaning, and direction in my life. When the UC Berkeley School of Optometry referred me to its low vision group during an eye exam, I felt my luck had changed. My entry into the group coincided with my medical retirement so I did not languish for long. It has been a lifesaver, a haven, and a forum for issues most unique to those with vision loss.
For two years, I functioned as a co-leader with two other women, but I have recently stepped down due to having difficulty tracking people on the computer screen. In these covid times, 2020 to 2022, even just hearing the group’s voices on Zoom provides connection to like-minded souls. We choose speakers and topics such as low vision aides, community resources (such as Lighthouse for the Blind, Zoom Yoga for the Blind), and most recently we had a speaker that focused on body language and taking charge of when you are in a potentially uncomfortable environment (if you are harassed, etc.).
I read my last large print book in 2010, so I made a comfortable transition to the audio format. My rehab counselor and the rehab center helped me apply for and obtain a special mp3 player called the Victor Stream which can access thousands of book titles from the Library of Congress or in short, called BARD. This mp3 at any one time houses up to 200 books for me that have been transferred religiously either from the BARD website or Audible.
While for some women their house, their jewelry, or their wedding dress might be identified as their most valuable possession, I unequivocally claim that my mp3 player is my most valued item. I read one to three books a month, including one for my book club, which has met monthly for the last twelve years at my home.
When I listen to my books, I feel connected to narrators of many statures, some famous (Tom Hanks, Trevor Noah, Isabelle Wilkerson), some volunteer. It gives me a sense of being in a private audience, bringing my chosen books to life, and I feel less isolated from a visually oriented world.
What happens when a tangible element of my nurturance and pastime gets lost? For Christmas, I had gifted Ted a book highly recommended by his Cypriote family called, The Island of Missing Trees by Elif Shafak. I bought this book in duplicate so that for the first time in 38 years Ted and I could read the same book simultaneously.
This book takes on special significance not only because my husband rarely reads books, but because it is an evocative fictional account of a Greek Cypriot falling in love with a Turkish Cypriot, which belies the cultural enmity that lords over them on the small Mediterranean island of Cyprus, Ted’s birthplace. I had placed the audio CD in the left pocket of my blue robe, vowing to keep it there until I had finished the book I was reading for my book club, Deacon King Kong by James McBride.
Alas, when that moment came, I felt in my pocket and the disc had disappeared. I experienced a near panicked state, not only because of the monetary value embedded in those selections but also the emotional attachment to all those literary adventures now lost. Although it was 9 PM, I could not rest until this beloved CD, with 30 books on it (worth $450 in Audible subscriptions), could be found. I retraced all the places I had been in my bedroom and bathroom, skimming floor surfaces, and opening drawers of my pedestal bedframe that contained gift wrapping paraphernalia and gift boxes.
Ted joined me in the search, which became like a tandem detective adventure. We labored through the search for 45 minutes, until it felt like the search for this disc was like finding a needle in a haystack. Suddenly, Ted called out jubilantly, “I found it … in the garbage!” I was completely flummoxed by that discovery but slowly conceded to the fact that the disc had fallen into the waste basket underneath the bathroom sink when I had disposed of my dental floss before retiring.
In our family, whenever anyone achieves a victory that is observed by others, we exclaim, “(Name) scored another point!” Of course, Ted had scored many points for this discovery, and I hugged and kissed him gleefully. After this, it delighted me to find that I could immediately immerse myself into the Shafak book to such a degree that it will be one of my selections for our 2022–2023 book club picks.
Memoir, creative nonfiction, and personal essay have all been my chosen genre, both because it promotes catharsis about my life and becomes a review of life events. Writing becomes like a kaleidoscope with many images and interconnections. When I write, I feel as though I embark on a journey; often delving into the past, while other times exploring the present and the connection between the two. Writing also helps me to view myself as creative and dynamic rather than the converse of remaining static.
Another resource that I located in 2019 was a local Writer’s Workshop led by two women with MFAs in Creative Writing, both published writers and educators. With both in-person and later Zoom classes, this writer’s workshop has educated and nurtured me in my writing craft via classroom reading, exercises, and prompts, as well as workshopping and line edits of my narrative essays. This Writer’s Workshp has been an invaluable writing community for me to connect with.
With the loss of my computer fluency and the ability to view the screen, through the Saint Mary’s College of California MFA program, I discovered a real gem for me to address this issue. My writing assistant serves as an attentive, invaluable, and irreplaceable tool to facilitate my ongoing writing endeavors. I dictate my stories to them, and they type and edit my work. They also help find sources to submit my work to, something I never could have done on my own, and many of my pieces have found their homes due to their work (Uncomfortable Revolution and You Might Need to Hear This).
Although I hope to integrate voice-to-text software to continue my writing more independently, it could never replace my writing partner. The level of trust I feel with them far exceeds what my wildest expectations could have been for a writing assistant, as I am sharing all my gritty and joyful moments with them.
A unique challenge came to me on October 17, 2021, when I attended the funeral of a close friend. This would be the first event during the pandemic where I would not be in a small, intimate group without masks, but rather I would be in a gathering of over a hundred people, most of whom I did not know. I felt anxious and overwhelmed about how to navigate this event, this memorial, this grief.
Upon settling into my folding chair with my husband next to me, my fears soon dissipated as I provided myself with my own answers. Underneath the masks, the adoration for the deceased and the grief-stricken moments could not be lost. Most important was to support his widow, and to listen intently to the stories and reflections of those family and friends speaking before us. Although my hearing is somewhat reduced, my auditory functions remained intact. The most important lesson gained from this memorial was to pay attention, connect, and to ponder my own mortality, because like with my close friend, the end can be unpredictable and unexpected.
In my mind’s eye, I look at loss not as a process that is demoralizing, enveloping, or gloomy, but rather as a catalyst that welcomes curiosity, invention, and discovery. Whereas object loss can represent an inconvenience to me, there are much more far-reaching losses of loved ones, relationships, and abilities. I aspire to transcend the discomfort and uneasiness into a more cosmic and shared experience, and I am hopeful that when I look back at my life with losses, I have learned new lessons rather than remaining immobilized in a quicksand of loss and deficit.
