The thing nobody warns you about is how ordinary it looks from the outside. My mother did not go blind dramatically. She went blind by degrees, over about nine years, and most of that time she was still cooking, still on the phone, still telling me I worried too much.
What she lost first was faces. Not the whole face. The middle of it. She could see my hair, my shoulders, the shape of me in a doorway, and where my features should have been there was a smudge she had to look around.
She kept an Amsler grid on the fridge and checked it every morning with one eye covered, the way she had been told to. For a while the lines were straight. Then one morning in March they were not, and she stood in the kitchen and did not tell anybody for four days.
She said one sentence more than any other in those years, usually while looking at something else. I just hope my kids don't get this.
“I am 54. Last spring the optometrist said there were some early changes, and nothing to do yet.”
What “nothing to do yet” actually means
I want to be fair to him, because he was not being careless. On the current standard of care he was right: for early changes there is no treatment to start. The injections come later, if things move, and they are not something anyone begins early for the sake of it.
But I drove home from that appointment with a folder of nothing, and a very clear picture in my head of a kitchen with a grid on the fridge. Being told there is no action available is a different experience when you have already watched where the road goes.
What I did in the twelve months after
In the honest order, not the sensible one.
- Started the same eye vitamin she was on. AREDS2, because her ophthalmologist had recommended it and it felt like doing something. I am still taking a version of it.
- Read the AREDS2 trial itself. Not the summary. The actual paper. It is about slowing progression in people who already have intermediate disease. It is not preventive for a 54-year-old and it never claimed to be.
- Cut what everyone tells you to cut. Smoking was not relevant. The diet changes I made were sensible and I have no way of knowing whether they did anything.
- Asked about genetic testing. Was told it would not change management. Which is true, and which did not help.
- Bought a magnifier before I needed one. It is in a drawer. I do not want to talk about why I bought it.
What I could not find, in any of it, was an explanation of the mechanism that anyone had bothered to give a patient. Everything was risk factors and statistics. Nothing was about what is actually happening.
