By Karan Nagrani
Karan with his dog Henry.
Hi, my name is Karan Nagrani. I’m from Perth, Western Australia. My whole life I’ve had to come out of two closets: “I’m gay” and “I’m blind.”
Believe it or not, the blind closet has been a lot more complicated. I was diagnosed with retinitis pigmentosa (RP) at the age of 11. It’s a genetic, degenerative eye disease that leads to blindness.
At the age of 36, I have less than three degrees of peripheral vision, very severe night blindness to the point where I almost can’t function without assistance, and some hearing loss that makes it necessary to wear hearing aids.
I was born with RP and even though it’s rare, my mum has RP so I knew something about RP and vision loss. The hearing thing was a new thing altogether.
This is what Karan’s specialist wrote down, with a guess that his hearing loss comes from a gene variant connect to retinitis pigmentosa.
My hearing got worse with time and in my 20s got of comments from my friends, like “your ears are painted on,” and “OMG Karan are you even listening.” I used to laugh it off and having a low attention span didn’t help. I would really struggle to hear everyone in a group setting, and always had the TV up quite high. It’s only in my 30s did I realize that it’s not normal to not hear things all my friends or coworkers could.
Something Genetic
I had my ears checked and there were signs of hearing loss. I wasn’t surprised but it was a hard pill to swallow because I was already going blind and using a cane and now I need to wear hearing aids as well. Once I started raising awareness I learned that when you have RP along with a hearing loss it might be Usher syndrome.
But Usher usually presents with the hearing loss first, with the vision problems coming later. I saw a specialist last month and they said my hearing loss isn’t because of Usher syndrome but instead it may be that I have a very rare form of RP with a variant of the RPGR gene that is causing the hearing loss.
It goes to show that there is so much to learn about inherited retinal dystrophy. It’s made me realize that I have to do everything in my power to raise awareness before I lose whatever little vision I have left.
Coming Out and Accepting
Retinitis pigmentosa is a different journey for everyone, but, in my case, with how fast my vision is deteriorating, I’m preparing myself to be completely blind in a couple of years.
Why the disability closet has been harder to come out of is because my vision has deteriorated over time. In my 20s, I managed to resist and, to an extent, get away with not using a cane. I was in denial. And being a part of the gay world, where there is so much emphasis on the way you look, I felt like a cane would make me look ugly. Also, at that time my hearing loss wasn’t as noticeable.
I grew up in a culture where we had to hide our flaws, especially when it came to a disability. From the time I was diagnosed to my late teens, I was told not to tell anyone about my disability. So I grew up hiding my sexuality and my disability.
Karan’s Instagram shows how he’s putting his background in graphic design, video, and marketing to use to raise awareness.
As you can imagine, that takes a big toll on your mental health.
I lived in denial for so long. I chose to work in the creative field of marketing, graphic design, and filmmaking. I put my heart and soul into my career and wanted to do something that no one thought I’d be able to do with my disability.
I worked for almost 14 years and say with pride that I accomplished some amazing things. My work started to get noticed and that gave me a high—it made me push myself even more, even though seeing was getting harder and harder. Finally, two years ago I had no choice but to retire from that field, though I still do it as a hobby now.
Where Do I Go From Here?
My aim now is to raise awareness, but do it in a fun way. I’m using my graphics and filming skills to show traditionally sighted people what it’s like to live with RP.
I understand people have a lot of questions: My eyes look normal, but I have a cane. I’m blind, yet I manage to make eye contact sometimes. It confuses people—sometimes I get interrogated almost and I feel like I have to convince someone that I am genuinely blind. But what I don’t like is when people pity me and just assume that my life must be miserable.
I am married to David, the love of my life, and I have the most loving and supportive family. I have an amazing close-knit circle of friends and am fortunate to work in a place where people love and respect me.
It can be very scary living with RP, and I go through phases where life gets dark (pun intended), but this is my reality. There’s no cure, so I make the most of what I have, show gratitude for everything I have, and continue my newfound passion for raising awareness.
A version of this originally appeared on the website Blind New World. Karan Nagrani is a self-described “blind, gay mental health warrior” raising awareness for retinitis pigmentosa. Follow him on Instagram, Twitter, and TikTok, and check out this Reel to start.
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