This year was my first year of being a blind girl and one of the feelings I felt is as if I was thrown into a bullet train. There were no warning signs, I had no choice and it happened so fast.
I was born with multiple medical conditions, because of my sickness (Alagille Syndrome), and one of this medical condition is called Cone Rod Dystrophy. Cpne Rod Dystrophy is an eye condition that affects my vision. All my life, I’ve had to see the eye specialist for check ups, testing and monitoring. All my life, I was never told about the future of my sight. Then, one day during another ophthalmology appt I had to ask the question (not directly as in, “doctor, am I blind?” but indirectly) to find out the answer – my right eye is legally blind and my left eye will probably progress as well. So, without a warning from any eye doctor, I woke up one day and found out that I am blind at 29 (Dec 2021). Did I have a say? Did I have time to think or prepare myself for this BIG, life-changing news? What just happened?
I had to travel on my own and part of this journey one of the things I had to do was quickly decide whether or not I’m ready for my new reality. Whether or not I’m ready to reveal my new identity to the outside world (excluding my friends and family). Whether or not I’m ready to step outside and tell the world, “Hey, I’m a blind girl!” and whether or not I’m ready to arrive at my destination of embracing my blindness.
I’m blind. Me. Nikki Lee. No one else I know personally is blind. I was on my own. I’m still on my own, because all my friends and family members are sighted. Of course, there is an Australian organisation for people like me, but of course I wasn’t ready to fully emerge myself into the organisation’s community. I’m still not 100% ready to enter into the low vision and blindness community today (2025). Even until today (2025) I still hesitate to tell that healthcare worker that I’m blind! Or that cashier. Or that stranger on the street. And at times, I’ve hesitated to state my new disability on paper (health questionaires). I had no choice. I have no choice. I know I have to write down my disability (not literally though, because a fully sighted person helps me write it down). I know I have to say I’m blind for my good, for my safety, for assistance and for others to understand me.
I talk about my blindness on this blog. I briefly talk about my blindness in my book. And if I were to be asked to talk about my blindness on stage or social media, I’ll do it, because it is my passion to share my story. But yes, I’m still working on telling ALL my doctors that I’m blind. I’m still working on wearing that, “I have low vision” badge to tell ALL the people in public that I’m blind, or have low vision. It’s complicated. I’m complicated. The bottom line is I’m still not ready to fully embrace my blindness.