Some people enter the world with a blank slate, unaware of the challenges that may lie ahead. I, however, was born already carrying an invisible one. My journey with Retinitis Pigmentosa (RP) began before I could even walk and although the world around me couldn’t yet detect it, my body already knew. When I was about a year old, my mum noticed something unusual: I constantly bumped into things at night. No one could explain why. Over 7 different doctors have examined me in Trinidad, yet answers remained elusive. Eventually, when I was age six, I was referred to an eye specialist who suspected RP. Since Trinidad lacked the necessary equipment for confirmation, we traveled to the U.S so that we can get a diagnosis from the National Eye Institute in Washington, D.C.. There, at age seven, Dr. Caruso formally diagnosed me with Retinitis Pigmentosa. However, it wasn’t until I turned fifteen and read my medical files that I fully grasped what RP was—and what it meant for the rest of my life.
Retinitis Pigmentosa is a rare genetic retinal dissease that causes progressive vision loss. My case stems from a mutation in the RPE65 gene which is one of the rarer variations of RP. This mutation disrupts the retina’s ability to respond to light, producing symptoms such as night blindness and eventual peripheral and central vision loss. While RP presents differently from person to person, it often surfaces in childhood and advances gradually. In some cases, individuals lose their vision entirely at an early age. Fortunately, my progression has been slower than most. Nevertheless, the journey has been far from simple and the uncertainty has shaped every stage of my life.
Growing up with RP meant that I experienced the world differently. Night blindness was present from birth and over time I developed light sensitivity. By 2022, even reading regular 12pt print became increasingly difficult. I learnt to adapt by using larger fonts, screen readers and accessible formats such as audio and digital books on Kindle or Kobo. Colour perception has also been a challenge; I can see colours, yet they lack the clarity and accuracy others take for granted. Today, I still retain some vision in both eyes, although I live with the knowledge that it may continue to decline. Currently, I am consulting with a retinal specialist and surgeon regarding the possible treatment of Luxturna: a gene therapy now available in Canada for individuals with the RPE65 mutation.
Emotionally, discovering I had RP was devastating. Once I finally understood its implications, I felt betrayed by my own body. For a time during my teenage years, I sank into depression and anger, grieving the future I thought I would lose. Remaining in that state, however, felt like living in a second prison: one I was determined not to accept. Gradually, I reached a point of acceptance, recognizing RP as part of who I am. That shift became the turning point. Acceptance did not make RP easier, yet it made me stronger. Living with RP, I realized, meant constantly existing between two worlds: the sighted and the blind. Too often, I’ve been told I am “not blind enough” to receive certain accommodations, yet “not sighted enough” to be considered fully capable. That liminal space is exhausting, as though I am carrying a constant burden of proof, having to justify my experiences, not only to strangers, but even to medical professionals and loved ones.
The outside world, unfortunately, did not always meet me with kindness. Bullying was common in school. I was laughed at when I struggled to see the board or when I accidentally walked into objects. At one point, I was even given the nickname “blind sicko.” Some of the deepest pain came from those closest to me. My father’s attitude changed after my diagnosis; it seemed as though he viewed me as a disappointment. Even today, I sense that he considers me a failure. A few cousins joined in the mockery and discrimination extended beyond my peers. Parents of classmates discouraged their children from playing with me, convinced RP was contagious. Some even believed I saw in black and white like a dog. The ignorance was often harder to bear than the condition itself. RP already shaped my life in profound ways, yet the stigma and misinformation created wounds that took far longer to process.
Amidst all of this, one person remained unwavering and that is my mother. She stood beside me through every medical appointment, every emotional breakdown and every small victory. Her belief in me became a scaffold that allowed me to rise above the cruelty of others. She reminded me that disability did not diminish my worth and that I could still carve out a meaningful life on my own terms. Her love was the steady light that kept me moving forward even when I felt consumed by darkness.
Over time, I’ve proved many people wrong. Those who claimed I would never complete secondary school were proven to be mistaken. Those who doubted I would ever attend university were silenced when I began my Master’s degree. Those who insisted I would never amount to anything now see me as an immigrant in Canada and building a life I am proud of. My vision may be limited, yet my determination knows no bounds.
RP has taught me resilience. It has shown me how to adapt when the world does not offer a clear path. I have learnt to embrace being different and to reject the idea that the judgment of others defines my worth. Far too often, people assume that disability equates to a lack of intelligence, ambition and capability. My life has been a constant demonstration that such assumptions are false. At present, I am awaiting to learn Braille and undergoing mobility training through CNIB. Progress is slow, yet each step forward is meaningful. These adjustments are not about “overcoming” my condition; rather, they are about evolving within it. Growth, I’ve discovered, does not mean defeating one’s limitations but it means expanding within them.
RP has not simply impacted my life; it has shaped it entirely. Through its challenges, I have become someone my mum and I truly admire. This growth has not occurred in spite of RP but, in many ways, because of it.
Mystic Anomanly 