Feeling Like an AMD Ambassador

Do you ever feel like an AMD (age-related macular degeneration) ambassador? Someone who goes out into the world and shows people what AMD looks like? I have been on a cruise for about a week now and I seem to be doing just that.

Lack of vision impairment awareness

Amazingly, people know absolutely nothing about what I understand is the leading cause of blindness in the developed world. They pretty much have never heard of it! People also have no idea what visual impairment/blindness in general looks like.

There is a lot I cannot see but there is a lot I can. That confuses people. They expect people who have "legal blindness" to have canes and sighted guides. They don’t expect us to be mobile but to be sitting in a corner doing nothing.

Navigating the ship

I have been able to motor independently around this ship every day. I climb the stairs and I walk the track on the sports floor.

Do I get lost? Of course! Just about everyone does! Getting lost on a cruise ship is normal. I probably have more problems than average because I cannot see signs.

Instead, I use other clues. For example, descending the stairs, I know I am nearing my floor when I pass the little girl’s “dress” artwork hanging on the landing. If I get too confused, I ask. There are so many staff members on the ship, I am always guaranteed to get help.

Vision impairment is misunderstood

I went swimming with the piggies and the next day I went to “swim” with the sea lions. There was a family on both of these tours that I started talking with.

In the course of the conversation, I mentioned my sight loss. The response was typical: amazement! How could a person who is “legally blind” “pass” as I do? Either I was lying or their beliefs were mistaken. I would vote for the second option.

Twice this week I was being given a form to read and sign. I don’t bother to carry my hand-held magnifier or iPad around the ship with me. My assistive devices were back in the cabin.

Patronizing questions

Also, I had my glasses on my head. My prescription is for distance and does nothing for me for close work. Twice – I repeat TWICE – I was told to put my glasses on and that way I could see! I hesitated to ask if I actually appear that old and that addled. Of course, I knew my glasses were on my head! If they would have been beneficial, I would have used them. Good grief.

I tried to explain that I have a central vision loss. I don’t see what I am looking at. Refraction has nothing to do with my problems. I don’t think I was understood, but I tried.

Bringing me to the last bit of education I had to do. To wit, I was asked why I would take a helicopter tour of Miami if I could not see it.

For what it is worth, I saw a LOT while zooming around a clear, blue sky. I have good peripheral vision and most of the panoramic view I had was recorded on my peripheral retina. What was blurry or absent because of my scotomata was ‘filled in” by my brain and I never missed it. Bright, blue sky looks like bright, blue sky no matter if you are really seeing it or if it is a phenomenon of perception.

The hopeful ambassador

So, that’s that. I have been an AMB of AMD on this cruise. Hoping I did something positive. Maybe? All we can do is try.