Blindness on the PCT: Finding My Spot in the Low-Vision Community

The following is a guest post by A. Owyang

If you looked at me, you probably couldn’t tell that I have a visual disability. On the trail, I don’t look any different from my sighted peers; I wear sunglasses and a brimmed hat and use hiking poles. What onlookers may not notice are the subtle differences in my gear. My sunglasses have side shields to block out sunlight more effectively, and my brimmed hat helps me avoid hitting low-hanging branches that seem to hide just beyond my visual field. Although I don’t use a white cane, I sometimes rely on my hiking poles as an extra hand to help assess the terrain in front of me.

I was recently diagnosed with a progressive vision loss condition called retinitis pigmentosa (RP). It refers to a family of rare inherited vision loss diseases that cause light-detecting cells in the retina of the eye to degenerate. This results in symptoms of sensitivity to light, difficulty seeing in low lighting, and loss of peripheral vision. There is no cure. For those affected, RP will cause them to slowly become blind at varying rates, and I am no exception.

No one else in my family is known to have RP. My initial visual symptoms were bothersome but tolerable–and therefore overlooked. After I was unexpectedly diagnosed during an annual eye exam, I learned my brain had been seamlessly stitching coherent visual storylines without my conscious mind realizing it. I’d been living with low vision for some time.

Amidst waves of shock and grief after the surprise diagnosis, I sought out retinal specialists, occupational optometrists, and therapists to make sense of my visual prognosis. As I stepped foot into the low-vision world, I discovered that blindness exists on a wide spectrum: from missing pieces of the visual field puzzle to blurry images to indistinct shadows of light and darkness. Depending on the stage of progression, another person with the same RP diagnosis likely perceives a different visual world.

Although I had not seriously considered thru-hiking the Pacific Crest Trail before last year, I’d always felt a deep sense of joy from hiking and being outdoors. I relished my backpacking trips up and down the west coast near my home and in awe-inspiring places such as Montana, Maine, Iceland and Patagonia. Long before my formal vision loss diagnosis, I’d experienced the sanctuary that the backcountry offered. I’d felt content and at peace when I hiked to cathedrals of rock, sat in the stillness of nature, and gazed up at the galaxy’s stars.

When the opportunity to embark on a six-month hike with my partner presented itself, I was immediately drawn toward the seemingly insurmountable challenge. I’d hiked small sections of the PCT in Tahoe and Lassen Volcanic National Forests, but nowhere near 2,650 miles.

Despite nervous anticipation about the record-breaking snowpack and high streamflow in 2023, I hungered for the challenge that would bring lifelong memories, unexpected friendships, and possibly even a meaningful way to fit RP into my life. At that point, I dreaded and despised the prognosis of blindness that loomed over my future. The opportunity to witness breathtaking, scenic, and remote areas along the West Coast–and to face my grief on a deeper level–ultimately moved me to commit to the trail.

Before starting the PCT, I didn’t think about what it might be like to hike all day for months with low vision. With each passing week on the trail, I quickly became aware of my relationship with sunlight and how the sun could impair my vision on the trail. Particularly in the late afternoon, the sun’s rays would sneak into my line of sight and bleach out my vision, replacing it with paralyzing flares of light. These moments of temporary functional blindness were usually accompanied by lingering headaches–and envy towards other hikers unbothered by the light.

But as the sunlight faded at dusk each day, I faced a different challenge on the trail. One of the earliest symptoms of RP is difficulty seeing in low lighting. Even as my eyes painstakingly strained, the dim lighting in the backcountry would momentarily disorient me. I became familiar with my night blindness in mundane tasks, such as setting up for dinner or pitching our tent at dusk. When the sun set, items became momentarily lost—as if they’d walked off and disappeared—until my headlamp or the next sunrise illuminated them. The low lighting created a frustrating visual sensation akin to wearing sunglasses at nighttime.

Particularly in darkness and after dusk, I recognized my reliance on those around me to navigate the miles. After my partner and I tagged the northern terminus in Washington, we turned around to begin the ~30 miles back to Harts Pass, our final destination. The hour turned late and rain began pelting us through the thick overhead tree canopies. I could barely see anything in the pitch-black night as we hiked beneath a blanketing mist. With only our headlamps illuminating the way, I tracked so closely behind my partner that my momentum catapulted me into the back of his pack when he stopped.

Earlier in the hike, in the desert section, acknowledging this reliance would have been difficult because it meant I couldn’t finish the hike on my own. Over time, I realized that I wouldn’t be able to accomplish the miles without help. I eventually became better at recognizing visually challenging situations and asking for help from my partner, trail family, and trusted community.

Beyond the sunlight and darkness that affect my vision, the edges of my visual field have gradually deteriorated. While hiking, I learned to adjust my walking habits. After suffering countless twisted ankles and even tripping and falling, I adapted to my version of tunnel vision by glancing down at my feet and frequently moving my head to compensate for the missing areas in my visual field.

As I often needed to come to a full stop to look up and take in the sweeping views, I initially leaned toward the trail nickname, Break. But as the saying goes, the trail provides; and the trail eventually gave me the name Spot. I became fond of this trail name as passerby hikers frequently told us how good, beautiful, or scenic my chosen break spot was. Finding scenic spots to take breaks became a sort of game for me. While focusing on the ground when hiking began as a way to protect against the perpetuity of twisted ankles, coming to a complete stop became a way to fully immerse myself in the trail’s beauty.

At the start of the thru-hike, I shied away from talking about my low vision as it brought about grief that existed below the surface. I carried uncomfortable feelings of vulnerability, shame, and despair that I felt about my diagnosis. Among trusted trail family and friends, I slowly shared my motivation for undertaking the hike: my vision loss. Over subsequent months of hiking, my trail family helped me open up about my RP by respectfully asking questions about my visual experience. We postulated about non-vision based ways to capture the breathtaking views we were witnessing together. With each step, I became more comfortable talking about my low vision and asking for help from those whom I trusted.

I began the Pacific Crest Trail wanting to hide from my visual disability. As I returned to my reasons for thru-hiking repeatedly on the trail, I felt gratitude for the incredible natural world as well as all the supportive people in my life. As I walked further north, I slowly realized that I didn’t need to hide anymore and, instead, I wanted to share my story. Although the days were long and challenging, hiking continuously for six months helped me comprehend the context in which RP exists in my life. From my trail experience, I learned to look for and honor my spot in the low-vision community.

Featured image composite: Photos courtesy of A. Owyang