October 7, 2021

I Can’t See in the Dark—Yes, Seriously.

 

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I don’t remember being afraid of the dark as a child.

I know that early on I developed an ability to find my way around as though I could see—when I couldn’t. Perhaps it was down to my memory? I had definitely learnt where things were. Maybe my subconscious took note of the distance of the corridor and the number of steps on the stairs?

The ability stayed with me as I grew and even now I am surprised by how easily my body guides me to the bathroom in the dark when I am sleeping somewhere new.

What I do remember, though, is how it felt at night when I walked around the house I grew up in—I felt awake!

Every other sense was amplified in sensitivity. I could hear the faintest of sounds, smell the mildest scent, feel the lightest of draughts, and sense movement from adjoining rooms. What I couldn’t do was see.

It felt as though my entire being was alert and I experienced a level of awareness that I have not known since.

When I was small, my parents were likely oblivious to my condition as I must have masked it well—until it became problematic that is.

I recall walking home along a moonlit path with my family one evening and being plunged into darkness after leaving an area with streetlights. That is my first memory of feeling fear at being out in the dark. At home I knew my way around; it was safe. Outside, I was scared.

I know that I became upset, hysterical in fact, and refused to move another step. Being told that I could see because the stars were shining brightly that evening was of no help. I was not being “silly.” Eventually, my hand was taken and I was guided along the path. My stumbling and tripping was met with surprise, as everyone else seemed able to see where they were putting their feet, but in front of me was an infinite black space.

They responded as most parents would—how could they know that my eyes processed light differently to theirs?

Yes, I ate my carrots (I loved them in fact), so being told to eat more of them was not what I needed to hear. And no, they made no difference whatsoever!

I grew up avoiding badly lit areas at night, or ensuring I was with someone I trusted to get me safely to my destination, should I need to venture off the beaten track.

Finally, after an eventful New Year’s Eve when I thought I was going to spend the last few hours until dawn in the middle of a field, I decided it was time to mention it to an optician. Technology had advanced and they were able to offer me a test on a new machine, which recorded how my eyes responded to light.

I was referred to my local hospital and after many tests over several years, I was diagnosed with a condition called congenital stationary night blindness.

Hoorah! Being able to say: “I told you that I couldn’t see in the dark!” was deeply satisfying.

Luckily for me, little changed other than developing a greater appreciation for how differently I saw the world to everyone with normal eyesight. That is until this year, when the DVLA contacted me to advise that they were imposing a restriction on the drivers licences of anyone with this condition. I could not drive in the dark—ever again.

Thoughts raced through my head about how this would restrict my life and what practical changes I would need to make, but the most overwhelming sensation that I felt was gratitude. That may sound strange, but I consider myself lucky. My condition is “stationary,” static, and that means that I’m at no greater risk of losing my sight than anyone else with healthy eyes.

In 2015, there were an estimated 253 million people with a visual impairment worldwide, and of these, 36 million were blind.

I am grateful for my ability to drive during daylight hours, and mostly, I am grateful for my sight.

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