There are only 14 people in the whole world like me. Here's the superpower I discovered
2024-09-25 15:32:37
TiranaPost
When I woke up one morning in 2016, I immediately knew something was wrong.
Suddenly, I realized that I could not distinguish between shades of blue, green or red.
I was 27 years old and losing my colors overnight was something difficult, especially for someone other than me who worked in graphic design. I had never had any problems with my vision before, so the sudden change was alarming.
Worried, I booked an eye appointment with the optometrist that day, hoping to get some answers.
My vision was only at 20/30 – nothing major, but enough to prompt them to do more tests.
For the next three years, I was constantly being followed by ophthalmologists and my vision got worse and worse.
When I turned 30 I was disqualified from driving and at 32 I was registered as blind.
Wolfram-like syndrome - a rare autosomal dominant disorder can be passed down genetically and can affect vision loss as one of the symptoms.
Wolfram syndrome itself is fatal and extremely rare – only one in 800,000 people have it.
But until this year, I was the only one in the UK with Wolfram-like syndrome. Apparently there are only 14 people worldwide with it.
I should be able to keep my peripheral vision for the rest of my life.
For me, now, it's about being as healthy as possible: not smoking and making sure I get plenty of exercise and eat healthy food. The worst thing for me now would be to have a condition that anyone in the world can get, like glaucoma or cataracts. I just want to live as healthy as possible to avoid this.
Part of being healthy, for me, also means staying mentally fit. And photography has been a blessing.
Around the same time I started losing my sight, I started taking up photography.
At first I started following some photographers on Instagram and in 2020, I bought my first camera.
Today I use a Fujifilm camera. It's the best for me because most modern cameras now require you to enter the menu. But Fujifilm is one of the only brands where you make all your settings using the touch buttons and numbers on top of the camera.
Even though my camera is modern, it looks like it's from the 60s or 70s, like an old analog camera.
Because my eyes are very sensitive to light, let's say if the light catches a tree or something, I'm drawn to that immediately, because photography is about following light.
Because my vision is static in the middle and blurry all around, I have to look for situations where there is contrast in the scene.
For me, photography was like any art, really. A creative outlet. I wasn't doing it with any hope of pursuing something. I just thought I would pursue it as a passion.
But since people are interested and can see my work on Instagram @adamstanawayy.
I use my hearing - if I can hear birds or something moving in the frame. I'm literally using all my senses right now.
My condition is almost like a superpower.
