‘You’re going blind.’ I thought I would wake up one day and see nothing but infinite, inky blackness.’: Woman shares sight loss journey, new perspective on blindness

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“My name is Bethany. I am a writer, disability advocate, foodie, and book lover living on Kaurna Land in Adelaide, South Australia. I’m also going blind. In 2018, I was diagnosed with Retinitis Pigmentosa, which is an inherited retinal disease that leads to progressive vision loss and even legal blindness. There are over 150 known genes that cause RP and the rate of vision loss someone experiences depends on which gene they have. I’m the only person in my family that has it. There is no cure.

A visually impaired woman with long brown hair wearing a black T-shirt
Courtesy of Bethany Cody

I first started noticing that my sight was changing when I was around 13 to 15 years old. I had trouble seeing at nighttime, and during the day, I would see these odd visual distortions similar to bright shimmering lights and TV static. In the beginning, I kept these things to myself because I was scared to speak up and tell someone that my sight was changing. At the time, going blind was one of my biggest fears. It wasn’t until 2018 that I finally admitted to what was going on and told my optometrist about what I was seeing. He remarked that my retinas were quite thin and sent me off to see a few different specialists where I underwent some strange new tests.

One of these involved sitting in a room by myself, smothered by a thick, woolen blanket placed over my head, staring at a fixed point inside a machine similar to the visual field test, or perimetry test (a white, bowl-shaped apparatus that flashes points of light of varying brightness to determine your scope of peripheral vision. You have to stare at a light in the very center and there is a handheld clicker device that you press when you see any flashes of light outside of your central vision). I remember leaving this appointment with the doctor’s words in my head, ‘You’re really night blind.’ At this stage, there wasn’t any mention of support or avenues to look into for my mental health, and I was left to shoulder these feelings of uncertainty and fear alone.

Shortly after this, I received my final diagnosis. ‘You’re going blind,’ was a shock to hear. My current retinal specialist didn’t sugar-coat what was happening to me, which I’m thankful for now that time has passed and I have some perspective, but initially it was so overwhelming. I was numb for a while, aimless, wandering around in this weird, liminal space full of what-ifs and worst-case scenarios. I thought I would wake up one day and see nothing but infinite, inky blackness. Fortunately, now that I am more knowledgeable about RP, I understand that I won’t lose my sight overnight but gradually over time. It leads to peripheral vision loss, also called tunnel vision as your periphery shrinks, blind spots, light sensitivity, visual snow and can cause other issues like cataracts and glaucoma, or increased eye pressure. Cataracts and glaucoma can be managed with regular check-ups and surgery, but RP itself, the deterioration or death of the rods and cones in my retinas, cannot.

These distressing thoughts crossed my mind several times a day, every day. It took a long time to come to any form of acceptance. I struggled with self-harm in my teenage years during bouts of body dysmorphia and reactive depression, and for a while after my diagnosis, I found myself contemplating going back to this maladaptive coping mechanism. I’m so grateful to have a solid support system in my fiancé Alec, my family, and my friends, who got me through those difficult times, and I emerged from the other side, unscathed. It’s difficult, feeling like I’m losing control of my life, this loss of independence. I can’t legally drive, and I rely on family and public transport to get around. I walk into doors, bump into people on the street and kitchen cabinets, miss high fives and other social cues, and am utterly hopeless when walking at night. The grieving process never really ends but ebbs and flows.

A visually impaired woman stands with three members of her family
Courtesy of Bethany Cody
A man wearing a baseball cap kisses his partner on the side of the head
Courtesy of Bethany Cody

Throughout my sight loss journey, I’ve come to confront my own ableist beliefs about blindness and try to embrace every moment as it comes, to appreciate the here and now, and to turn my pain into empowerment. I am very passionate about dismantling the stereotypes that exist about blindness and sharing the fact that blindness is a spectrum—everyone’s experience of blindness is unique and valid. However, society’s expectations for blind and visually impaired people are extremely harmful and outdated. We love fashion and makeup, movies and entertainment, cooking, art, photography, sex, and sensuality just as much as fully sighted people. We are adventurous, we use smartphones, and not every one of us has a guide dog or uses a white cane. We deserve to be treated with respect and kindness, not fear, harassment, or judgment, as do all people with disabilities.

A visually impaired woman wears a black shirt reading "Blindness is a spectrum" in letters and braille
Courtesy of Bethany Cody

In late 2021, I received the results of my genetic testing and learned that the gene responsible for my Retinitis Pigmentosa is called USH2A. This is a subtype of another rare disease called Usher’s Syndrome. People with Usher’s Syndrome have RP combined with varying levels of hearing loss. My genetic counselor suspects that I have RP type 39 which is associated with non-syndromic Usher’s Syndrome because I haven’t had any issues with my hearing, and this is unlikely to change. My gene is also recessive, which means I am not likely to pass it on to any children my partner and I have in the future. This was one of my biggest worries or anxieties before we got the results back. I was living with guilt for something that hadn’t even happened yet. This is a common thing I find myself doing as I continue to lose my vision, mourning moments before they arrive. It isn’t good for my mental health but sometimes I just can’t help but wonder about my future and the uncertainties that come with going blind.

Finding community has been such an important and invaluable part of my journey. Connecting with others who are blind or visually impaired has broadened my knowledge, understanding, and attitude towards blindness. I have made many new and amazing friends from all over the globe and have discovered that I am never truly alone in what I’m going through. As a writer, I’ve found that it also helps to explore what is happening to me through the written word, in memoir pieces, poetry, and fiction. I’m currently working on a book all about RP and me, and my biggest hope is that my journey can reach someone who is struggling, just like I was in the beginning, and give them some perspective, guidance, laughter, self-confidence, and support.

A woman holding a plaque and standing with two older ladies
Courtesy of Bethany Cody

In the last four years, I’ve had many amazing opportunities like appearing as a guest on the Vision Australia radio program talking with Stella Glorie about my journey with RP. I’ve become a Tru Faces ambassador (a Canadian based, international disability awareness organization), a member of the inaugural CYDA Youth Council, member of the WWDA Policy Advisory Group and a Bold Blind Beauty ambassador (American-based, international organization for people who are blind and visually impaired). I’ve had my poetry and creative writing published in several online and print magazines and have received a few awards. I’ve also had the chance to participate in a few fundraisers organized by RP Hope and Retina Australia, to help raise awareness and fund vital research into treatments for inherited retinal diseases.

A young woman in a grey sweatshirt and glasses holds up a book in front of a brick wall
Courtesy of Bethany Cody

I’ve learned that we can overcome any obstacles that occur in our lives. We are so much stronger than we ever give ourselves credit for. But it’s also important to not fall into the trap of toxic positivity: we need to give ourselves space for unpleasant feelings and work through uncomfortable or painful moments, rather than bottle things up until they inevitably explode, and to find a support system to turn to if these feelings become overwhelming. Asking for help is not a sign of weakness like I once believed it to be: it’s an opportunity for growth and progress.

Most recently, at my latest six-monthly specialist appointment in March of this year, I was told I would ‘run into a lot of trouble’ in my forties. This was really confronting to hear, and it’s still sinking in, but I’m leaning on my support system for comfort and encouragement. I’m very lucky that in the same year I found out I’m going blind, I met my now fiancé, Alec. He has really brought me out of my shell and opened up the world for me, and I feel so grateful that we’re building a life together. Blindness is a really big part of my life, but I am more than my disability. It doesn’t stop me from living my life, I just do things a little differently.”

A woman wearing glasses and her fiance wearing a black T-shirt lean into each other
Courtesy of Bethany Cody
A visually impaired woman displays the Braille tattoo on her left forearm
Courtesy of Bethany Cody

This story was submitted to Love What Matters by Bethany Cody of Adelaide, South Australia. You can follow his journey on Instagram. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories like this here:

‘You sure don’t look blind.’ It gets old. Every day, I am being robbed of my remaining vision.’: Woman with rare visual impairment urges ‘be kind always’

‘When should we worry?’ The doctor said, ‘Now.’ The next thing I remember is crying in my husband’s arms.’: Mom of son with hearing loss, Usher Syndrome shares journey

‘How can a BLIND guy go to the cinema?’ The choice to use a cane is a HUGE step.’: Man with Retinitis Pigmentosa raises awareness for sight loss

‘There was no Braille on the washrooms, no audio devices available. Some areas weren’t service dog accessible’: Mom to blind daughter pushes for accessibility

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