What does still alive mean?
I have a very rate genetic deffect called Adrenoleukodystrophy. It’s not easy to explain. So I’m linking to a video:
In the beginning of my 30’s I developed the adult cerebral type. I had very tiny symptoms from X-ALD affecting running. I got a stem cell transplant right away, with very little side effects at first. A couple of months later unfortunately I got chronic graft-versus-host-disease. I had a lot of treatments including experimental ones.
How did you get blind?
Due to graft-versus-host disease I got cataract in both eyes accompanied with bleeding and infections. After lots of treatments agsinst graft-versus-host and my eye bleedings and infections I finally got graft-versus-host under control after two years. By then my optic nerve was majorly crippled.
What do you see?
Because of my crippled optic nerve and laser treatments against bleeding, I have less than 2 degrees field of view left. This YouTube video at the end is a pretty good simulation of what I see:
On the left eye I have a small area in the upper left corner, where I can tell if its dark or bright outside. The left eye has 10% vision in the small spot. The right eye less than 2%. On my right eye I have major distortions and I get dizzy, if I use my right eye too much. The spots where it’s black in the video are gone for my brain. I don’t see anything there. Hard to imagine 🙂
I’m very light sensitive. I get blinded very quickly. Even at night I wear sun glasses. Looking through sun glasses at night makes almost no difference to me. Everything that is bright is white. Everything that is dark is black to me. If I have an eye test with a grey background with black text instead of the white background, I can’t see any letter or numbers.
A weird thing: I can’t distinguish green and blue very well. I sometimes think green lights are lights from police cars 🙂
Overall my vision is so bad, that I am legally blind in Germany.