I’ve wanted to write this article for a long while, but I haven’t had the energy nor the courage to articulate my thoughts coherently until now.

Fair warning: though I’ll try to maintain my usual, playful tone, this article contains frank discussion of serious mental health difficulties including depression, anxiety, and grief. If you find yourself experiencing these or other difficulties, I encourage you to seek professional help. I know this is frightfully cliché, but truly, it can get better.

Here goes.

Today, I see (pun intended) my blindness as a strength rather than a weakness, but it hasn’t always been that way. Rather, my disability was a source of shame, embarrassment, and distress for many years.

My story begins years before I was diagnosed. I had a wonderful childhood, full of make-believe faeries, Guide Dog puppies to cuddle, and unlimited bedtime stories. Yet even though I’d grown up raising service dogs, I prided myself on my ‘perfect’ vision. I was the only one in my family who didn’t need glasses, a detail that I internalised as part of who I was. My diminishing vision threatened that identity at a time when everything else around me was in flux, and I refused to admit that something was wrong.

I struggled along, faking normality with varying degrees of success. Inevitably, my secret leaked, and the jig was up. My diagnosis wasn’t a shock; I’d known for ages that something was wrong. Still, Stargardt undermined my sense of self. I was faced with a darkening future, and I didn’t know how to cope.

Once my attempts at clinging to sight failed, I withdrew into denial, isolating myself from anything that could expose my weakness. I didn’t cooperate with my retinologist’s advice to protect my eyes, embarrassed by how my sunglasses made me stand out. I refused mobility training and Braille. In school, I tortured myself with perfectionism in an attempt to prove myself worthy despite my inherent flaw. I felt worthless, condemned, alone.

The years came and went, and I gradually realised that I no longer saw myself as a sighted person with some vision loss, but as a blind person with some residual sight. It seems like a minute semantic quibble now, but that one change in the language I used to define myself fundamentally and irrevocably altered my attitude towards my disability. Accepting the label ‘blind’ allowed me to welcome Stargardt into my identity not as a flaw, but as a fact. With that realisation, I could overcome the negative parts of Stargardt, and harness the positives as sources of strength.

With the help of my friends and family, I began to enjoy talking to people about my experience as a Stargardtian. I found purpose in volunteering with organisations like the Foundation Fighting Blindness, the Colorado Talking Book Library, and the Anchor Centre for Blind Children, communities I’m still part of today. I asked my teachers for accommodations like large print assignments and extended time on exams, and I found that they were extraordinarily supportive. I found new ways to accomplish what I needed to do and to do the things I love. As it turns out, blindness isn’t the end of the world; it’s only a roadblock I have to overcome.

Vision loss—like any degenerative condition—is a grief process. Despite the different circumstances, I notice remarkable similarities in the way that I reacted to my diagnosis and to the passing of close family members. In both cases, I lost something very dear to me, and I was numb, then angry and confused, then mournful, and finally accepting of my new reality. I’ll never forget the profound, insatiable pain of losing a loved one, the nights I spent staring at the ceiling in hollow silence, the mornings I’d wake to the harshness of the world without them. And though those haunted nights and empty mornings still visit me, I can too recall and reclaim the joy my loved ones’ presence brought me. In the same way, I still spend some nights in fear that Stargardt dooms my future to be submerged in darkness, but I find solace in how the stars shine brightest against the blackest skies.

I still struggle with depression and anxiety, largely attributable to the feelings of worthlessness that came with my diagnosis. But even during the most hopeless episodes, I know that Stargardt is as important to me as any other part of myself. All the growing pains of coming to terms with Stargardt have helped make me a stronger, wiser person today. And though those restless nights drenched in the fear of my future are torturous, I’m glad that Stargardt is here to help me through each step along the way.

I think the most important lesson here is that we decide how disability affects the way we view ourselves. If we only focus on the negatives, disability becomes our greatest weakness, But if we learn to harness the positives that it brings, disability can become a superpower.