When I traveled to Santa Cruz in late 2019—about an hour and a half away from my home—it had been a big win for me. Having developed hyperacusis (chronic sound sensitivity) in the year prior, I was worried about how driving longer distances might affect my ear pain. I posted a photo to my Instagram of a man walking down the stairs to the water with a surfboard over his head, a number of other surfers in the water behind him, writing, “I pushed my body to make the 3-hr round trip to Santa Cruz yesterday and feeling really proud of myself. It felt so good to gently expand my limits and although my body is feeling it a little today, it was all worth it. Traveling and exploring new sights is a gift, and something I’ll never take for granted ever again.” I had been to Santa Cruz before, but even just seeing new places within a city I already knew felt special. A friend commented, “You’ve always been an explorer.” I started crying when I read her words. Before, the idea of me being a traveler and explorer seemed to be just another identity that I had lost when I became disabled. I hadn’t traveled outside of my general region since 2015, and hadn’t traveled outside of the country since 2013, and was unsure at the time about if or when I would be able to travel longer distances again. I knew how fortunate I was to have the travel experiences I did before my health problems started, but it didn’t make grieving the loss of what I used to be able to do any easier. My friend’s comment made me realize that exploring is less about the distance I go and more about my mindset and curiosity of the world; that no matter the size of my travel radius, my desire to capture the beauty of my surroundings will always be a part of me.
When I first learned photography in high school, over 17 years ago, one of the most important lessons it taught me was that anything—even the most seemingly mundane, everyday details of life—had the potential to be beautiful. That lesson deepened when I became disabled in 2014 and my movements became more limited and unpredictable. When I first suffered a concussion, even walks in my neighborhood, while possible, were limited and proved challenging, due to my light sensitivity. I spent a lot of time for at least the first six months of my concussion at home in my bed, listening to podcasts or alone with my own thoughts. Several months after I got a concussion, I started experiencing chronic neck and shoulder pain. In 2018, I was diagnosed with hyperacusis, which affects what environments I can tolerate and how long I can socialize for. At various points over the six years before the pandemic, I had been confronted with different types of world shrinking, unpredictability, and lack of total control over what I was able to do. I’ve learned not to take anything—even the smallest of joys—for granted.
Towards the end of the book, Come As You Are, Emily Nagoski writes about people’s concerns about whether their bodies, their sexuality, is “normal”. When I read this quote, it resonated deeply with my experience of chronic pain and disability. She writes,
I have a small comic taped to my office door. It shows an old Buddhist monk sitting next to a young Buddhist monk. The older monk is saying, “Nothing happens next. This is it.” Being more nerd than nun, I see it as a commentary on...the importance of training your little monitor to enjoy the present rather than constantly push toward the future. I remind myself every time I walk into my office, “This is it. Right now.” What if . . . this is a radical idea, but just go with me: What if you felt that way—“This is it”—about your sexual functioning? What if the sexuality you have right now is the sexuality you get? What if this is it?
Navigating chronic pain and disability has forced me to confront the idea, “What if this is it?” when it comes to my body, my health, and my life. It’s forced me to be creative, adaptive, and resilient. It’s forced me to ask myself, “Ok, if this is it, then what can I make of it? How can I make my life most beautiful, even amidst all that I’ve lost and all that I don’t know?”
When shelter-in-place began, I also felt this strange hope simmering in me. “Maybe,” I thought, “with more people at home, the gap between the disabled and nondisabled worlds will shrink.” While I’d like to believe this has been an instructive time for many, I also found myself over time feeling more and more isolated. Being used to isolation and limitations because of my chronic pain and knowing intimately the physical, emotional, financial, and professional consequences of chronic pain and disability has meant that my priorities and risk calculations are very different from a lot of other people. I fight every day not just to try to get better, but to at the very least maintain my general baseline. The things I would hear people lament about “only” being able to do during shelter-in-place, while understandable, are things I’m terrified of losing if I got Long COVID.
Now, in this post-vaccination-but-not-quite-post-pandemic world, those feelings of isolation have continued. Seeing more things “return to normal” right now doesn’t inspire excitement in me, but rather a sense of dread, knowing that with more things opening up, more people doing things that resemble “normalcy”, there’s more possibility of breakthrough infections. When I hear people say, “Most breakthrough cases are mild!”, I know from my own health issues that “mild” doesn’t always necessarily mean innocuous or temporary, and am frustrated when Long COVID gets treated like a footnote or afterthought. When I hear rhetoric along the lines of, “I know we’re all sick of masks!”, I'm instead concerned about when the mask mandates will fall again (and in fact, think they don’t go far enough). When I see students and teachers being forced to go back to school in-person, with little remote options available, and not always with mask or vaccine mandates or adequate ventilation, I feel horror at what medically vulnerable people have to navigate.
I am very fortunate in that I have been able to stay at home during the pandemic. I am far less vulnerable than essential workers, immunocompromised people, and other more vulnerable members of society. And yet, keeping myself safe and healthy amidst a society that treats disabled people as invisible, disposable, afterthoughts, or inconvenient roadblocks to “normal” has been nothing short of stressful and exhausting.
***
My photo project is about the beauty I see and am able to carve out for myself amidst my own limitations. These photos represent some of the things I’m able to do that I’m fiercely trying to protect during the pandemic. It’s about the complex feelings I have about my own chronic pain: the grief, anger, loss, fear, and uncertainty for the future, but also gratitude for what chronic pain has taught me about life and what’s actually important. It’s about my simultaneous desire to continue to heal and be able to do more, while still making the everyday details of beauty and small joys enough. It’s about the pride I have for the resiliency and adaptability I’ve been able to cultivate for myself from my chronic pain, that’s helped prepare me for the isolation, uncertainty, and limitations of living through a global pandemic.
My project is also about questioning what’s “normal”. The photos in this project were shot on my iPhone and have been taken over the past year and a half, from anywhere as close to a few blocks from my house, to about an hour and a half away from home. It’s a very similar travel radius that I had pre-pandemic. It visualizes my “normal”: my reality that my world did not dramatically shrink overnight with the arrival of a global pandemic, that most of my limitations already happened long before the world ever shut down. Isabel Abbott wrote in the beginning of the pandemic about how she felt disability sidelining/erasure in the pandemic discourse, “when disability wisdom might be needed more than ever,” and that’s something I related to. Abbott also wrote about the importance of sharing her experience of being disabled during the pandemic, with the hopes of “the possibility of acknowledging and reckoning with the ableism that has permeated our entire way of doing and being, and that we begin to work together to re-imagine and create new ways that do not leave anyone behind.” I want to add my voice to the mix, so that more people are aware of the unique challenges disabled people like myself have faced during the pandemic. I remember when I first became disabled, I realized just how little I had considered disabled people, ableism, and accessibility. I hope that this period of time has been similarly educational for nondisabled people. At this transitional stage of the pandemic, where more people are vaccinated, and there is more incentive to “return to normal”, it’s more crucial than ever to question “normal”, and work to build a world that actually works for all bodies, pandemic and beyond.
As Sonya Renee Taylor wrote:
We will not go back to normal. Normal never was. Our pre-corona existence was never normal other than we normalized greed, inequity, exhaustion, depletion, extraction, disconnection, confusion, rage, hoarding, hate and lack. We should not long to return, my friends. We are being given the opportunity to stitch a new garment. One that fits all of humanity and nature.
*Thank you Sarah Lerner for your support, and Erica Lupinacci and Amanda Crommett of the Suffering the Silence Team and Michelle Velasquez-Potts for your feedback on my written component.
IMAGE DESCRIPTIONS:
Photo 1: Green, blue, orange, and yellow automatic bubble machine perched on a wooden fence blowing out a bunch of bubbles. There is a grey house and clear blue skies in the background
Photo 2: View of the Golden Gate Bridge from a view point above Marshall Beach. There are a bunch of yellow flowers in the foreground, and the blue ocean, the gray, grayish-brown, and dark green cliffs, and the Golden Gate Bridge blurred in the background
Photo 3: Pink bougainvilleas covering a brick wall and framing a wooden garage door, with a pink house with dark brown trim in the background
Photo 4: A monarch butterfly on a white milkweed plant, with another monarch butterfly overhead with full wingspan blurred slightly in the background. There are some other milkweed plants and clear skies also in the background
Photo 5: A close-up of bunch of pale purple hydrangeas of various shades, and green leaves surrounding them
Photo 6: Overhead shot of the ocean. The water is dark blue and emerald. There is a white seagull with dark gray wings flying low by the water. There are partially cloudy skies in the background
Photo 7: A white and black-patterned spotted cat with his back turned away from the camera but face looking at the camera, with aqua-ish blue staircases and a potted plant in the background
Photo 8: A silhouette of a bird standing on top of a tiny structure in the lake. There’s a silhouette of several buildings in the background, with the orangey-yellow sunset illuminating the clouds overhead. The buildings and the sunset are reflected in the water
Photo 9: Looking up to a row of off-white/cream-colored pampas, with partially cloudy skies blurred in the background
Photo 10: A cluster of ladybugs on a green leaf, with other green leaves blurred in the foreground & background, with a slender, spiky brown stick in the middle
Photo 11: Overhead shot of San Gregorio State Beach. There is part of the cliff (which is colored both beige and grayish-brown) in the foreground on the lower left hand side of the photo, and the blue ocean and beige sand with a few people on the beach down below. The coastline runs in a diagonal throughout the photo. The skies are partially cloudy
Photo 12: Portrait of a red, pink, and white speckled rose. There are green leaves in focus in the foreground and some green leaves and gray sidewalk blurred in the background
Photo 13: Wooden bench with light blue, gray, and dark blue floral cushions, with a toy lizard and toy crocodile hanging out on the wooden armrest in the foreground. There are green plants and a couple of pink flowers blurred in the background
Photo 14: Pieces of broken glasses in various shades of blue. There is a medium blue piece of glass in the center front part of the photo that’s in focus, with the rest of the glass pieces blurred
Photo 15: A row of around five brown trees in a wooded area. The trees are reflecting onto the water
Photo 16: Different shades of green and red plants on a hill, with some sand paths in between them leading down to the beach. The gray-blue ocean with some gentle waves is in the background. The skies are cloudy
Photo 17: A paraglider with a gray and black paraglide in the top left part of the frame, with the blue ocean and part of the cliff underneath, in the background. The skies are cloudy
Photo 18: Butterfly with orange and white wings on the outside, dark brown, and white wings on the inside. The butterfly is on some lavender flowers and surrounded by other lavender flowers in the foreground and background
Photo 19: A single red Christmas light in focus, with multi-colored Christmas lights blurred in the background
Photo 20: Looking up to a curved row of skinny palm trees with a big palm tree behind those trees in the middle, with partially cloudy skies in the background
Photo 21: A tall green plant-lined tree in front of several parked cars. There are a few brown, wooden, two-story apt buildings and some tall skinny trees in the background
Photo 22: Bee on a lavender flower in focus in the background, with a couple of lavender flowers blurred both in the foreground and background. There are green leaves surrounding the flower with the bee on it
Photo 23: There’s a brown cliff that’s partially silhouetted in the foreground, with the ocean and an orange-blue sunset in the background. There’s a slightly curved upward row of silhouetted birds flying overhead
Photo 24: Sunset over Lake Merritt. The sunset is a neon pink with grayish-blue clouds. There are buildings silhouetted in the background and part of the lake in the foreground, with a string of lights between the lake and the buildings
Photo 25: Sunset shot at Muir Beach Overlook. There's a narrow, fenced trail that snakes a little to the end of the cliff/overlook. The photo has a warm tone. The ocean and yellow sunset and partially cloudy sky is in the background
Photo 26: Shot from above of a gray, orangish-brown, and white cat on the gray sidewalk about to scratch his face on a green, pointy plant. His eyes are closed and his face looks content. There are light green succulents slightly blurred in the background
Photo 27: A bunch of tall brown trees at Muir Woods. In between the trees is a dirt path with steps built into it. There are green plants to each side of the dirt path
Photo 28: A set of doors painted in red, orange, yellow, green, blue, violet, black, brown, and pink wavy vertical lines
Photo 29: Red and pink bougainvilleas in front of a yellow Victorian with light blue and pale neon green trim house
Photo 30: Looking up at the blue-orangish sunset sky, with some clouds and a bunch of birds that look like tiny black dots throughout the sky
Jennifer Lerner (she/her) fell in love with photography when she took her first film photography class in high school, over 17 years ago, and has been practicing ever since. Her art has been showcased at RAW Artists San Francisco, First Fridays in Oakland, and in Holl & Lane Magazine. You can find more of her work at @jennlerner on Instagram.