What I thought I knew was not what I thought

I have shared with you guys (maybe even over shared) so much. Now, more sharing.

There I was. Shocked. Feeling a bit robbed. Questioning myself. How could I not know? The mind plays tricks on us.

I thought I was red/ green colourblind. Turns out I don’t see any colours.

I have achromatopsia (or some sort of incomplete achromatopsia).

I am what is known as colourblind. Literally. So, I don’t just mix up my colours. I actually don’t even see them! Or do I?

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Colour is perception. Light, rays, rods and cones all join in to send a message to the brain. The brain then ‘sees’ the light/ colour. That is my simplistic explanation. A bunch of people see the same colour and give it a name…..

green

But now I know that what I thought was colour, was probably a tone or a texture, an illumination. My images are shades of grey, white, and black with an occasional dash of pink (or something….or nothing….).

How could I not know? What games was my mind playing on me?

I have all the symptoms of an achromat

Nystagmus (wobbly iris)

Myopia

Photophobic/ photosensitive (I squint a lot and wear my sunnies all day long, even when there are clouds)

How I found out

I was so excited on Saturday. I was going to try these glasses that claimed to restore colour vision. You would put on the glasses and see colours. Of course, these glasses do not work on everyone (I was warned). I wanted to try them. But first, they needed to determine what type of coulourblindness I had. I did the tests and got the diagnosis.

Achromatopsia

Very rare (2000 people in the UK).

So, what do I do with this information?

I am still the same person.

That is what everyone is telling me.

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You see colours your way.

That is what people tell me.

You still see the way you saw.

That is what everyone is telling me.

But I don’t. I don’t know what I see. I want to know what I can see. Still coming to terms with this. I have to adjust to a new normal. Was what I thought was pink or purple actually grey? Is everything grey? I am confused. Still confused.

Two days later.

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2 thoughts on “What I thought I knew was not what I thought

  1. Hi Joanna,
    Thank you for sharing this. You’ve already done a lot to raise awareness of colourblindness, and I think you’ll continue to do the same with Achromatopsia. Whatever people tell you, it’s something you’ll have to accept for yourself at some point, but take your time, and re-explore your world. You’ve been given a chance to think about your vision and appreciate it in a way very few people get. Like with my colitis – it’s annoying, I don’t fully understand it, lots of people can tell me stuff about it, it affects my life, it’s always there, but most of the time I can ignore it…
    Good luck!
    Sandy

    Like

  2. Pingback: The costs of ongoing health problems | Sandy Millin

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