Windows: An Ocular Journey
“these lovely lamps, these windows of the soul”
Guillaume de Salluste Du Bartas on eyes
Many sources are credited with some form of the phrase, “eyes being windows to the soul” whether it be from the Bible, to Cicero, to Shakespeare. I am unsure where I encountered this quote first. Windows represent a sense of inquiry, illumination, and insight to me. Some of my favorite windows have been Tiffany-stained glass that I can gaze at appreciatively, the expansive floor to ceiling windows in my Oakland home from which I can see the rugged landscape and sprawling cityscape, and the small windows on an airplane, where I can travel through the clouds. Windows allow a porthole to both good and evil, to engage us or profuse our souls, while also serving us radiant sunshine or London fog or harrowing rainstorms. My personal windows, or my azure blue eyes (from my Czech and German parents, a quality I have seen as beautiful as dazzling water and as peaceful as the blue sky), and how they have changed my life.
My first window of sorts was my glass incubator, where I lived for three months as a preemie, fighting to survive a meager 2 lb. and 14 oz. birth and the loss of my twin sister, Christine, after three days of life. I cannot recall how I viewed life at this tender age, but I assume I saw light, dark, and colors. As was the clinical standard in 1951, I received rich and concentrated amounts of oxygen flowing in from a side porthole on my incubator. While it sustained my life, along with attentive nursing and medical care, feeding tubes, and breathing support, I learned later in my 20s about the downside to this life-instilling oxygen gas. This overflow of oxygen led to adverse effects and formed Retinopathy of Prematurity, a retinal disease that can lead to blindness, creating a tumultuous landscape for my vision.
From ages three to sixteen, my pug nose was a perch for many different glasses, from a pair of candy-cane striped frames to variations of blue, gray, and wired frames. Eagerly, as I reached my teens, I sought out an optometrist who could fit me for a pair of hard blue contact lenses – a place to spend my hard-earned baby-sitting money. These provided clear vision and a clear face, untainted by my now coke-bottle thick lenses. What a relief to my body and soul to not have to wear something so visible on the outside, and instead hide it within my eye. I proceeded with my contact nirvana until my mid-30s, at which time my eyes could no longer be a suitable home for the lenses because of a dry-eye syndrome.
At age 25, ophthalmologists in Southern California diagnosed me with Retinopathy of Prematurity (ROP), formerly termed retrolental fibroplasia (RLF). This diagnosis followed me like a sinister stranger in the night. I felt protective of my eyes, both because of my glasses, and because of some gentle teasing from my family for being “blind as a bat” or wearing coke-bottle lenses or being four-eyed.
My first major alteration in my visual landscape occurred in 1977. At age 26, while performing a pap smear on a mobile health testing job site, I suddenly saw polliwogs and rainbows moving around on my left field of vision. Since I was not at a rainbow’s edge, I knew that something was wrong.
After the exam, I anxiously exited the trailer door and proceeded to the medical director’s office. Upon telling Dr. Jeff about my woes, he set himself to exploring what my medical options would be. We agreed that I was probably having a retinal detachment. Soon, I was heading from our Central California cannery site to an ophthalmologist’s office at Franklin hospital in San Francisco.
I remember warm tears flowing down my cheeks and my breaths coming in shallow spurts. Thankfully, two fellow health testing employees volunteered to drive me--one, named Carolyn, in my ‘64 Rambler classic--and the other following behind. What could have been a terrifying trip with this precarious vision-altering state felt more like a trance as Carolyn deftly drove my car northward.
When we arrived in Oakland, I hugged Carolyn goodbye and thanked her profusely for navigating me safely, and greeted red-haired Connie, also a nurse. She then transported me to San Francisco. Details of my trip to the city, examination by Dr. Lonn, and admission to the hospital escape me. I barely processed the information about needing a scleral buckle and recovery in the hospital for the next few days. How strange that I had not been admitted to a hospital since my premature birth, and now I was receiving care for my prematurity-induced eye condition. I recall phone calls, flowers, and even a visit from my estranged mother, who in her own inimitable way, brought me a pirate’s black eyepatch to protect my surgical eye.
Ultimately, after the surgery and follow-up visits, the final verdict was unpleasant music to my ears. Reattachment had failed and I only saw light and dark as if my left side windows had been boarded over or covered with a thick, black tarp that could only allow minute sunlight in.
Converting from two-eyed (binocular) vision to one-eyed (monocular) vision became a challenge to me. I remember feeling extremely uncomfortable and unsettled climbing stairs without a rail, because my depth perception had been altered. I also recall experiencing spilled milk, and although I did not cry over it, I laughed and muttered to myself about missing the tumbler I was pouring the milk into and spilling it all over the wood table. I would gradually learn to adapt to my changing depth perception by using rails or bringing objects close to me for pouring, dicing, etc.
With my remaining right-side vision, which was near-sighted and enhanced by a contact lens, I enjoyed life and clear windows of 20-20 to 20-40 over the next few years. When I looked into a mirror, it reflected images that I enjoyed and reflected back to me my azure eyes.
That began changing in 1988 when a dense cataract occupied my right eye. My windows had become fogged over and could not be wiped clean. Fast forward to anxiety-provoking surgical considerations for removing the cataract as performed by Dr. Gary Aguilar: there was a 10% risk for complications for cataract extraction with my previously diseased eye. The silver lining of this story is that it ended up working so well that I could grab Dr. Aguilar’s gold background paisley tie and tell him excitedly all the colors I could see. I never endangered his life by grabbing too hard but we both felt excitement after having 20/70 vision right after surgery and progressing steadily.
Episodic clouding of my vision occurred to a more minor degree after the surgery and was spirited away by YAG (Yttrium, Aluminum, Garnet) laser treatments that lasted about a year. By the end of my 25 years of successive YAG treatments, Dr. Aguilar cajoled me by saying I must hold the Guinness World Record for number of YAG laser treatments!
By 2016, my IOL Intra ocular Lens began growing dense tissue on it as well as my cornea, so further clearing of my window occurred with the installation of a corneal transplant, sadly from a three-year-old toddler’s cornea who had died in a traumatic accident. It is invigorating to know that there is indeed one part of me in my 70-year-old body that contains a youthful element.
A new disease, Hypotony (an extremely low intraocular pressure) tormented me for the next five years. With such low fluid eye pressure, my right eye lost even more of its very limited function and I was regularly greeted with numbers between two and five when I was supposed to be up to twenty mmHG. This score of keeping my eye pressure was as nerve wracking to me as a closely watched athletic scoreboard. Though mine was not meant for a crowd of spectators, it was like such for my husband and myself.
After Christmas 2020, my nocturnal trips to the bathroom changed gradually. Details of the room faded and soon I could only picture the black bathroom mat on the marble floor before I turned left into the toilet area. I had long lost the ability to see myself in the mirror, which reflected only my bare amoeba-like profile, blurring out my hair color, skin color, or details of my clothing. Fortunately, my husband who acts as my sighted guide, could help me match clothes, pick out matching earrings, and smooth out any blemishes in my makeup.
Early in 2021, I announced to my husband Ted that I would need to see my kaiser ophthalmologist again for this additional blurring. On March 16th, I arrived with sweaty palms and a heavy feeling in my chest to the ophthalmology offices, where Ted helped position me in the exam chair, and then sat in the left-hand corner of the room. The ophthalmology tech recorded my interval history, took my visual acuity measurements, which revealed only being able to see hand motions, and then shared my eye pressure of two with me. Although my eye pressure was not mounting, my personal psychic pressure was.
Retinal and corneal scans followed and then two doctors, for the price of one, consulted me. With his usual compassion that I have witnessed for the past 35 years, the MDs hesitated momentarily and then uttered, “We’re sorry to note that you now have phthisis bulbi.”
It sounded Greek or Latin to me, but it was the medical code for end-stage eye disease, or what I would later construe as a death sentence, for my right eye. All the parts of my eye, from anterior to posterior, from retina to fluid chambers, were closing in on themselves. At some indeterminate point, my eye might shrink to a degree that would require a prosthesis. The ophthalmology community that served me from my birth to present day no longer had remedies for me. No false hopes, no band aids, no hail-marys for me.
I walked out of their office, almost in a daze, holding my husband’s right elbow, as he is my seeing eye escort. I found myself quiet and pensive on our 15-minute ride home, and then collapsed on my bed, wrapping myself in my down comforter until the next day. I wanted only to isolate and immerse myself into this bad news and could not accept much, if any, human contact until the next day. I was beyond tears since my shock almost kept them from spilling or dropping.
Slowly, as I accepted words of comfort from my family and friends, mostly via the phone, I emerged from my bedroom and went up the fourteen steps to the kitchen with my head held high. Since I still knew where most things were, I used my hands to find snacks, wash dishes, and function as a sous chef for our meals. Gradually, it became clear to me that only I could make an attitude shift from an unfortunate victim to what I now call a mystic traveler, adventurer, soul. When I adopted this frame of reference, I found that I moved from self-pity or resignation to adventure, hopefulness, and treating every day as a new day.
What have my windows seen or not seen through my 70 years? I have had a progressive descent from capturing most visual details around me to the pleasure of seeing my husband, daughters, and friends and all the details of their faces and statures to a progressive loss to only light, dark, and movement. Although my Oakland house has floor to ceiling windows, I can only see a dense fog now, while maintaining a visual memory of Lake Temescal, surrounding bridges with their lights on at night, and the occasional deer family or turkeys gobbling by. I am grateful for my mind’s eye that retains old images of the hillside our home sits on and of cherished humans. Although my right eye’s window has gradually closed, covered, altered, I am grateful for the ability to look inward at myself, my strengths, my foibles, and my hurts, both self and other directed.
Kathy Stephanides resides in the San Francisco Bay Area with her husband. She has two grown daughters. Since 2010, Kathy has honed into memoir/essay as a way to make sense of her life, especially with her progressive visual loss to the point of having to leave her forty-year nursing career. She finds that writing gives her catharsis and a sense of meaning in a host of challenges from a traumatic childhood and Retinopathy of Prematurity.